Out of surgery

3 06 2017

Well another surgery done. Just like last time I went in to have one lesion removed and by the time my surgery date came around I developed another lesion. I am seriously stitched up like an old hand made quilt that has been repaired one time too many.  This time it was on my upper thigh so it pulls on the stitches every time I try to sit down. I am trying to be easy because last time all the stitches tore open and it took about 3 months to close up and heal. I defiantly don’t want to go through that again. My chronic lymphadema is also out of control due to the surgery. Good news I made it through another surgery. I will start my immunotherapy injections on June 12th.  I will have injections every three weeks and it will take about 2 hours for each treatment. The doctors are talking about 6-12 months of therapy.  I just hope I can tolerate this and that it might keep the cancer away for more than year l!  I’ll post again after my first treatment to let everyone know how it went. I’m going to just believe it will be a peice of cake with no residual side effects.

Another positive update……my eyes are still really bad with the pre retinal detachment in both eyes and cataracts in both eyes from the chemo. I will have to be followed closely for as long as I live but they have finally stabilized.  Wooohoooo I was finally able to order new glasses so that I can see.

Wishing everyone a fantastic weekend and asking that you all will continue to prayers for my friend Peggy. She needs all the prayers she can get as she continues to fight off two different cancers.

Thank you and love you all.

Latest News:

22 05 2017

Well as most of you already know I am not very good at this blogging.  I take entirely to long to write between posts.  This is still the best way to keep everyone updated even though it takes me such a long time to write between posts.  First I would like to ask all those who read my post to say a prayer for a friend who is going through more than anyone should every have to go through.  She was recently diagnosed with two different types of cancer.  She has had surgery and is currently going through chemo and radiation.  I know this is very tough on her but I am confident God will see her through this.  She is a beautiful person inside and out which makes it so hard to understand why. God has his reasons that which are only known to him.  Maybe he just needed a few more good people to be an inspiration to others!  I am not sure but please pray for Peggy as she needs all the prayers possible.  God listens and he answers.

As for my update.  I found out that once again my cancer has shown its ugly face.  I am having surgery on the 2nd of June to remove it.  It just doesn’t want to go away and stay away.  I guess it just really likes me.  I am going to start immunotherapy  infusions on June 12th.  The infusions will be every three weeks and they will take 2-3 hours each visit.  I am hopeful this will be easier than the chemo which did not work well for me.  I am still trying to adjust to my vision changes!  I am sure that I will get rid of this again because I have way to much to do in this life.  The potholes in the road of life are showing up a little to frequent for my liking so I will be praying that God sends a road crew down here to fix the potholes, at least for a while.  I need a break.  I was really hoping to write about getting my neck surgery done.  The implant I had put in did not fuse and is causing the nerves in my arms and hand to die, and I continue to have large golf ball size knots that come and go on the back side of my neck which is really painful. I am now on hold for that surgery until I finish the immunotherapy.  I am really not sure why they don’t like to operate on patients with cancer or in therapy.  I think if your going to feel bad just go ahead and do it.  Well I guess we will see if I can talk the neurosurgeon into it anyways.  Never hurts to keep asking right!  So on a good note I am B-Raff + which is typically a worse diagnosis than being B-Raff – but there are more treatment options for B-Raff + patients.  This means that even if it keeps coming back I can try other things to stop it.  I am getting worn out pretty easily these days and the pain from my neck problems is getting worse.  I don’t get to sleep much so I am always tired.  I have switched to plastic cups or metal water bottles because I seem to drop everything.  I am tripping and falling a lot more, which is totally embarrassing.  A real train wreck but I am sure I too will get through this soon enough and hopefully better days are coming.  Yes, I am still smiling, still holding true to my faith in God, and live each day appreciating it as if it were my last.  Pray, Pray and Pray.  Don’t forget God is your best friend and he is always waiting to have conversations with you too.  If there is one thing I can not preach enough of it is that we all need to appreciate and make the most of every day.  Say I love you more often, pick up the phone or write a letter to those you have not had a chance to talk to lately but you think about often.  Make a bucket list and start checking off those things on your list.  Why wait……we never know when our time will be up so let’s make the most of each day.  Throw any anger or stress out the window.  There is no time for silly games.  Be happy every day.

A practice I started about 5 years ago is a good one for everyone to try.   Each day wake up about 15 minutes earlier than usual.  Get up grab a cup of coffee, or whatever you like to drink, and go outside or sit next to a window where you can look outside at something beautiful.  Take these 15 minutes to list everything you are thankful for.  Do this every day and try not to repeat anything you mentioned the day before.  You should continue doing this until it becomes a habit.  You may think it will be hard to think of things you are thankful of for 15 minutes every day but you will be surprised at how easy it actually is.  I can promise you this, you will start your day off in a good mood, you will be more awake and alert and you will find in time that even on your worst day things won’t seem as bad because you will think back to all the good things you were thankful for earlier that day.  Just try it for one month and see how it changes your moods each day.  You will look back a month later and see that you are not so quick to anger, the little things that used to drive you crazy will seem almost meaningless and your overall health might even improve.  Try it out and let me know what you think.   I am not a morning person and never have been so getting up 15 minutes earlier was really hard.  I constantly wanted to hit the snooze just one more time but then I would tell myself is 10 or 15 minutes going to make me any less tired?  The answer to that question was always “no”.  I would still be tired when the buzzer went off and I would still want to hit snooze again and again.  Eventually I started looking forward to getting up earlier.  I was much more alert when I headed out the door to start my day and I was happier.  I can’t wait for you to try this. TRUST ME….you will find this helpful and if you have a nice view while practicing this it is even better.  I choose to look out over my garden and watch the birds as they fly into the garden to feed.  There are so many beautiful birds and my favorite are the hummingbirds.  It is almost that time of year for them to be showing up again.  I am not much of a winter person but I have found that just looking out at the barren trees can be beautiful too.  It is a reminder of how God gives our planet a rest and after a long winter he will renew everything again.  The cycle of the plants, trees, insects, and animals is very beautiful and interesting.  How much time have you spent just watching mother nature at work?  Probably not much.  This 15 minutes a day will give you a whole new appreciation of nature as well.  Ok enough about this.

I want to thank everybody who takes the time to read these posts.  I am thankful to all of you and pray that each of you have a blessed week.  Take a deep breath and smell the spring air, take notice of all the plants that are beginning to bloom and remember to smile it is courageous.

Swelling that periodically occurs in neck

20 11 2016

Latest Report 11-19-2016

19 11 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 …

Source: Latest Report 11-19-2016

Latest Report 11-19-2016

19 11 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.

Follow up on side effects of Tafinlar and Mekinist

27 04 2016

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


Going Off Tafinlar and Mekinist again!

19 04 2016

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.



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