Great news for the holidays

I had my appointment with Dr.Lawenda yesterday. He is my radiation oncologist. He is a really interesting man. Here is a link to one of his websites, if you ever have a need to check him out... or are just curious: 
https://integrativeoncology-essentials.com/brian-lawenda-md/

Anyway, he had great news; the CT scan I had done December 5th was clear and stable. No cancer, no new things to worry about. The lung and my chest are stable and not worrisome at all at this time.
Yay!!

Thank you for all your continued prayers and well wishes. Mark and I know they make a world of difference. We love your hugs and your smiles and your continued, whether it is constant or occasional, participation in our lives. You have all enriched us tremendously,

We hope you all have a glorious holiday and that 2018 is a fabulous year for you all!

                                                             

PS

I had my 3 month CT scan this morning. My doctor appointment is the 13th. We do not want that phone to ring between now and then... they will call if there is something amiss on the scan. If everything is fine I will find out the 13th.

I feel great. I am doing a little more exercise and getting a little less tired. But, please, think good thoughts for us and this scan.

Jimmy V's amazing speech

So, This is Jimmy V week on ESPN. For those of you too young to remember him, he was a college basketball coach in the 80's and 90's (I know, I am getting old as you would have been babies or not even born yet! sigh).
Anyway, he was funny and passionate - a riot to watch on the side line. He was also very good and even won the NCAA tournament once.
He got bone cancer and by the time they found it the cancer had metastasized/spread all over his body. He died less than a year after his diagnosis, but in that time he formed the Jimmy V Foundation to awareness about cancer and money for research into a cure.
ESPN partnered with him in that endeavor and that year they gave him the Arthur Ashe Courage and Humanitarian Award at the ESPYs. I saw that broadcast and bawled my eyes out. But his speech was so profound that I go back to it over and over.

Valvano was in the final stages of his battle with cancer when he gave the speech. He had to be helped across the stage by friends dick Vitale and Mike Kryzewski. Those in the audience knew they were likely seeing his last public appearance and, in fact, he passed away 2 months after he gave this speech..

I edited the speech here (it's kind of long). I did not insert any on my own words or change any of his. I just removed a few things. You can google it and get the entire transcript, or watch it on ESPN or YouTube. It is thought provoking and can really make you reflect on your own life.

I’m going to speak longer than anybody else has spoken tonight. That’s the way it goes. Time is very precious to me. I don’t know how much I have left, and I have some things that I would like to say. Hopefully, at the end, I will have said something that will be important to other people, too.

Now I’m fighting cancer, everybody knows that. People ask me all the time about how you go through your life and how’s your day, and nothing is changed for me. As Dick said, I’m a very emotional and passionate man. I can’t help it. That’s being the son of Rocco and Angelina Valvano. It comes with the territory. We hug, we kiss, we love.

When people say to me how do you get through life or each day, it’s the same thing. To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. Number three is you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think and you cry, that’s a full day. That’s a heck of a day. You do that seven days a week, you’re going to have something special.

… and I always have to think about what’s important in life to me are these three things. Where you started, where you are and where you’re going to be. Those are the three things that I try to do every day.

…It’s so important to know where you are. I know where I am right now. How do you go from where you are to where you want to be? I think you have to have an enthusiasm for life. You have to have a dream, a goal. You have to be willing to work for it.

I talked about my family; my family’s so important. People think I have courage. The courage in my family are my wife Pam, my three daughters, here, Nicole, Jamie, LeeAnn, my mom, who’s right here too. That screen is flashing up there 30 seconds like I care about that screen right now, huh? I got tumors all over my body. I’m worried about some guy in the back going, “30 seconds?”

I just got one last thing; I urge all of you, all of you, to enjoy your life, the precious moments you have. To spend each day with some laughter and some thought, to get your emotions going. To be enthusiastic every day, and Ralph Waldo Emerson said, “Nothing great could be accomplished without enthusiasm,” to keep your dreams alive in spite of problems whatever you have. The ability to be able to work hard for your dreams to come true, to become a reality.
Now I look at where I am now, and I know what I want to do. What I would like to be able to do is spend whatever time I have left and to give, and maybe, some hope to others. Arthur Ashe Foundation is a wonderful thing, and AIDS, the amount of money pouring in for AIDS is not enough, but it is significant. But if I told you it’s ten times the amount that goes in to cancer research. I also told you that 500,000 people will die this year of cancer. And I also tell you that one in every four will be afflicted with this disease. And yet somehow, we seem to have put it in a little bit of the background. I want to bring it back on the front table.

We need your help. I need your help. We need money for research. It may not save my life. It may save my children’s lives. It may save someone you love. And it’s very important. And ESPN has been so kind to support me in this endeavor and allow me to announce tonight, that —we are starting the Jimmy V Foundation for Cancer Research. And its motto is, “Don’t give up . . . don’t ever give up.”

And that’s what I’m going to try to do every minute that I have left. I will thank God for the day and the moment I have. If you see me, smile and maybe give me a hug. That’s important to me too. But try if you can to support, whether it’s AIDS or the cancer foundation, so that someone else might survive, might prosper and might actually be cured of this dreaded disease.

…I thank you, and God bless you all.

Kathy

Great News!!

So, on Friday September 15th at my last visit with Dr. Lu ( my oncologist), he told me that my PET scan was terrific! My lung is clear and things seem to be moving along the way we want them to. He did caution me that I am at high risk for return or spread of the cancer one to two years from diagnosis. So we need to monitor closely.

On September 19, at my appointment with my radiation doctor, he said nothing at all lit up in the PET. there is no sign of the cancer at all! But, again, I need to be checked and monitored closely so we catch any recurrence quickly. Did I tell you they determined by the size of the tumor when they removed my lung that the cancer had probably been growing in there for 10 years?

I have a CAT scan scheduled for the first of December and a mammogram for next week.

Thank you to all of you who continue to pray and send good wishes my way. We know in our hearts all that love and concern made a difference. I can never repay you all or explain how grateful we are. you changed our lives and we are very grateful!!

Lead Lined Syringe

These are images of the syringe that the tech used yesterday on my PET scan. After reading more about the scan last week, I was curious about how they contained the radioactive tracers.

It is a specially designed syringe that is lead lined to protect the techs from over-exposure to the radioactivity. The techs even wear badges that track their exposure. The IV needle they put in your arm to receive the glucose is actually smaller than a normal IV needle - which was a bonus.

And because they are shooting you full of a concentration of glucose that is straight sugar, you have to have a finger prick blood test to see if you can tolerate the sugar. My sugar levels are "perfect". Yay! - I don't have to worry about diabetes she said..

I will find out on September 15th or 19th what the PET showed. In the meanwhile I am making plans, keeping busy, and to lower my anxiety I am trying to be crafty on the weekends (since the Mariners have let me down and I can no longer watch them, without extra anti-anxiety pills!) Does anyone want a home-made apron?

All about Thursday's PET scan

For my two other PET scans I asked a couple of questions – enough to understand the basics. But this time I am a little more curious about how it all works. So, I did a little research and here is what I have found out:

PET stands for Positron Emission Tomography. A PET scan uses small amounts of radioactive materials called radiotracers, a special camera and a computer to help evaluate organ and tissue functions. A PET scan can identify body changes at the cellular level.

Positron emission tomography is a type of nuclear medicine imaging.

Nuclear medicine is a branch of medical imaging that uses small amounts of radioactive material to diagnose and determine the severity of a variety of diseases, including many types of cancers, heart disease, and other abnormalities within the body. Because nuclear medicine procedures are able to pinpoint molecular activity within the body, they offer the potential to identify disease in its earliest stages.

Nuclear medicine imaging procedures are noninvasive and, with the exception of intravenous injections, are usually painless medical tests.

Depending on the type of nuclear medicine exam, the radiotracers are either injected into the body, swallowed or inhaled as a gas and eventually accumulates in the organ or area of the body being examined. Radioactive emissions from the radiotracers are detected by a special camera or imaging device that produces pictures and provides molecular information,

A PET scan measures important body functions, such as blood flow, oxygen use, and sugar (glucose) metabolism. Cancers thrive on sugar and in a PET scan the injected glucose gathers in the cancerous spot and lights up.

This is a PET scan image, not mine, that shows a significant cancer in the chest. 

My PET scan is being done to determine whether my cancer has spread to other parts of my body or see if my lung cancer has returned after treatment.

Cancer is a complex disease and occurs when cells in the body begin to grow chaotically. Normally, cells grow, divide, and produce more cells to keep the body healthy and functioning properly. Sometimes, however, the process goes astray; cells keep dividing when new cells are not needed. The mass of extra cells forms a growth or tumor. The sooner the tumor is found, the better the survival rate and Pet scans are valuable tools in that endeavor.

My Pet scan is Thursday morning at 7:30. Cross your fingers for darkness; we want no pretty colored lights in this old body of mine!

The Definitive Guide to Cancer

After my July appointment with Dr. Lu I was pretty depressed. after all I'd been through I was really hoping he'd say "It's all gone and it will never come back". That of course did not happen. But my dear friend Shawna reminded me that there are people like Chuck Watson who help themselves and live way longer than the doctors ever predicted. I FULLY INTEND TO BE ONE OF THOSE PEOPLE.
So... I've been read like crazy. And implementing the things that make sense to me. This book

is a wonderful book. It is written by 2 doctors who had cancer and have achieved long term survival.
It deals with a lot of science, but they've managed to make most of it very understandable.
When I started chemo Dr. Lu did a terrific job of educating us on foods to eat and foods to avoid to help ease the side affects and boost the chemo results.This book does a lot of that, but bit looks at how to prevent cancer, how to treat it, and what you can do to help stop it from spreading.
Mark and I have eaten healthier since I was diagnosed but now we often evaluate our meal by how colorful it is; green salad, tomatoes, cantelope, and steak make for a colorful meal and that's what we strive for. Lots of fruits and vegetables and especially green leafy vegetables.That is from the book.
We exercise (I am limitted to my treadmill for now because of the smoke) and plenty of rest. I also take a bunch of supplements (vitamins D and C, COQ-10, tumeric, melatonin, and a multivitamin with selenium). I would recommend this book for anyone at any stage of cancer- even if you do not have it and want to prevent that from happening.

A second book I read was by Kris Carr, also a cancer survivor. She's a little out there (retail therapy is still therapy she says). I would not give the book to a man or to my mother to read.  It is titled Crazy Sexy Cancer Tips. If you are thinking of getting it would preview it before I bought it.It did have some good things in it like remember to be grateful and to express your appreciation, don't keep it to yourself. And find something artsy to do to get your mind and heart back into seeing and creating beauty in your life.  Hence, many of you are getting things I am making because it really does feel therapeutic and good for me. It rachets up my positivity, which we ll know is important for healing.

So, I am so grateful for my friends and colleques. For people this last week who hugged me, smiled at me, told me how glad they were to see me again. You are good medicine and I thank you all!!

The first round is over!!

I need to figure out how to add emojis or other happy or inspiring images on this blog. Most of you know I am a color girls and the lack thereof bothers me.

Anyway, here is the news. I had a CT scan Wednesday the 25th and a big blood draw the next day. I saw Dr. Lu on the 28th.1
#1. The CT scan of just my chest was good. No traces of the cancer remain!
#2.  The blood work came back absolutely normal, so no concerns there.
#3.  The pnuemonia is finally all gone - yay!
#4.  My vitals were good and my lung sounded clear and strong.
#5.  Dr. Lu said I looked good, which is always flattering for a girl to hear. (An emoji would fit so well here)

That was the good news. The not-so-good-news is this:
#1. Because of the way my cancer presented there is a high risk it will come back or spread within the first year or two after diagnosis. I have a PET scan around the 15th of September to start the process of looking for more cancer.

Mark and I do not intend to let it come back. We walk the hills around our house every day, which is quite a cardio work-out for me. We went to Barnes and Noble and got two well researched books, by cancer survivors, who describe ways to stave off the spread. We changed our diets significantly after the initial diagnosis, but we will change them a little more. And we are headed back to Yoga on Tuesday night. That's the mind and body part of self-healing.

The soul is friends.We appreciate all you've done since last September. We'd love for you to stay a part of our lives. We know part of the reason I am still here is because of you. Thank you all!

Graduation

As usual I am a little late blogging. Better late than never, tho, right?

 On June 7th I got to ring the bell at the Cancer Center signifying that I am done with radiation! Moses has been with me from the beginning, even giving me my tattoos.
Aubrey is a lovely young lady and such a sweet soul. She was very helpful and supportive.


This is what it says by the bell:

These kind people gave me a graduation certificate and a beautiful quilt when I left after the last treatment.



What the future holds: I will have an appointment at the radiation center the middle of July to see how effective the treatment was.
The end of July I will have a CT scan with contrast of my chest to see if indeed all the cancer is gone.

Thank you so much to those of you who continue to pray for us, support us, and help us in so many ways. Our house is full of beautiful signs and sayings. We are eternally grateful.

The Real Radiation Machine

This is my radiation machine:



First I get into one of those lovely hospital gowns before they take me into the radiation room. There I lay on the bed, grab the handles at the top, and shimmy myself down into the impression pillow of my upper body so that everything fits. Then the techs rubber band my feet and push a little here pull a little there so that I am all lined up with the coordinates for the radiation.

When they have my body all adjusted just the way they want, the techs leave the room (and tell me to wave at them if anything feels wrong).  The bed then slides up to the machine and does a little back and forth dance until it lines itself up correctly.

The arms on the machine lower themselves down and they rotate around. There is a little buzzing and beeping and the big round arm stops a little sideways of my chest and blasts in the radiation. The rotation and the radiation happens twice. Once The techs leave and the machine starts it takes about 10 minutes. I didn't feel a thing (except one of my arms went to sleep rom being above my head so long).

Modern Medicine is just amazing!

Getting Ready for Radiation

  This is the machine they used to map my esophagus on Monday. It looks an awful lot like my CT scanner, so I am not sure it is the machine that will deliver the radiation. If it is not, I will take a picture on Tuesday and add it to the blog.

  This is a mold of my upper body. it will make sure I am laying in the same place just the exact same way each time.  I got a third tattoo, too. They wrote all over my sides and chest with a sharpie and took pictures ... I am impressed with how precisely targetted the treatments will be.

I am supposed to reach up and grab the handles so my hands don't figit.  They also wrap my feet in a giant rubber band so my legs don't twitch. And then they will shoot me with radiation for about five minutes.

I start radiation the 18th with a dry run, just to make sure there are no problems. Then, beginning Wednesday the 19th  I will have the treatments Monday - Friday until June 5th.

It has been fun to be back to work and I appreciate all the kindness everyone has shown me! The radiation may cause a sunburn like effect, or it may not. It might cause me to have heart burn-like symptoms since it is my esophagus we are treating, but they have medicine to alleviate that, should it happen. Since the side-effects are so minor I asked for the last appointment of they day and that will allow me  to continue to work.

I am anxious and excited to see you all again! I hope you all have a lovely weekend and a Happy Easter!

Visit with Dr. Aye, March 29

Mark and I went to Seattle to meet with my surgeon, Dr. Aye last Wednesday. It was for my 6 week check-up after he removed my left lung.

If you will notice the right lung is a little bit larger than the left and it has 3 lobes, where the left only has 2. So, I got to keep the better lung, the "right" lung.

The heart sits a little back and between the 2 lungs. and the trachea comes partway down between the lungs. As with a lot of our organs and senses, when we lose one, often other things get stronger to compensate. For example; many blind people have heightened senses of smell and/or hearing. As a result of the little bits of exercise I have been able to do since coming home from the hospital, my right lung has increased a little in size. It has started to push the trachea and the heart a little left of center! Which is a good thing - one we will hope continues.

Dr. Lu and Dr. Aye want me to do radiation and we will meet with Dr. Lawenda on Friday the 7th to figure that out. I had those 2 tiny lymph nodes in my media-stenium in October. the cleaned them out when I had the media-stenectomy and they have not come back. But just in case there are tiny "seeds" of cancer hiding in there we will do radiation as a preventative measure.

Thank you to all of you who read and send me comments about this blog. Thank you for your texts, your cards, your visits, your good thoughts... I saw a commercial after the Gonzaga game that said the hardest part of fighting any cancer is your mentality. My doctors have said the same thing. Without your constant concern and keeping connected, Mark and I aren't sure we could have come this far, certainly it would have been much, much harder without you. Thank you.

I'll let you know how the radiation goes.

Filling up

This is me in the hospital.
One of the nice things about Swedish is they let the spouse stay in the room over night, if they want. Mark stayed with me the whole time on a roll-away bed. He helped monitor all the medicines they came in and gave me during the dark hours, he held my hand while they gave me hepperin shots in the abdomen at midnight every night, and his calm reassuring presence made everything way more bearable. I am not sure how much sleep he got and I feel bad about that, but I am sure grateful he was there!

I had the have my head elevated at 30 - 45 degrees as all times. I slept at this angle, as well as sat that way all day. Dr. Aye put up signs on my door and on my bed to make everyone aware. When some-ne asked if I wouldn't like to lie flatter and get some rest, Mark quickly stepped in the tell them the scoop.

The extra bed you see beside me in the room came every morning to take me down a few floors for x-rays. I did not know this before but, when you have something removed in your body (like half a lung) and it leaves an empty spot - a cavity, your body works to fill up that space. In cases like mine a viscous liquid, almost like a gel, forms and slowly fills the empty spot. They would x-ray every morning to check on the progress of the liquid and see how the fill was progressing.

I go see Dr. Lu on March 9th and go back to see Dr. Aye at Swedish March 29th. After that we will know definitively how things went and what what our next steps are.

We thank everyone who has come to visit and brought such good cheer! We continue to be thankful for all the food (and dessert :)), and all your prayers. Stay in touch, please. After this tough winter I hope spring will be easy and beautiful for all of you.

pneumonectomy

Hello, I am sorry it took me so long to update this blog. Here we go...

On Tuesday February 7 I had a pneumonectomy at Swedish Hospital in Seattle. Dr. Aye did the surgery, which started at 10:00 and was done at 5:00. A pneumonectomy is the removal of half the lung - in my case the entire left lung.

Often the surgeon will make a long incision that runs parallel to your spine in your back. Other times they will make a similiar incision in the front by spreading your ribs and perhaps cutting through the sternum. I was lucky; Dr. Aye approaches the lung through your side. I look like I had a shark bite on my left side but it has really healed nicely and quickly.

I spent a total of 8 days in the hospital. 3 days in ICU (plus one more about half way through). We are grateful to all the people at Swedish who took care of me, but I started whining about coming home Saturday. We had a couple of small set-backs, but I got to go to a hotel near the hospital on the 14th and come home on the 15th!

Like I said, the incisions have healed really well and after a couple of weeks the pain is really tolerable. I don't do well with narcotics; they depress me a little and give me nightmares. But, things are going so nicely that even though I could take up to 8 pills a day I am down to only 1 and a half!!

I do little breathing exercises several times a day and Mark and I walk for 10-20 minutes when we can. He had to go back to work this week so I will be inside walking on the treadmill now. Currently the walk winds me, but that won't be the case forever.

We want to thank everyone who has checked in by text, who has come to visit me, and who has brought food (what a blessing not to have to worry about what to eat everyday - and most of you are way better cooks that me!)  All the support has been good and powerful medicine.

Lung Re-section

I am a little wobbly this morning so I hope it all comes together and makes sense.

I had a chest X-Ray on Tuesday evening and then saw Dr. Lu on Wednesday morning. He says it appears that the tumor shrunk again with the third round of chemo I did in December. I had a CT scan Wednesday afternoon that should confirm that. That's good news.

Dr. Lu confirmed what Dr. Aye told us after the wedge; that spot on the right side did not look cancer-involved and Thursday afternoon one of Dr. Aye's PAs said the same thing. More great news!!

I am a little scared and wanted some time to settle into the idea of losing my left lung, but both Dr. Aye and Dr. Lu disagree. Dr. Lu said if I was his mom he would tell me to take the first possible date and get the cancer removed. Dr. Aye said "Let's get it out so you can go on with the rest of your life".

So, my lung resection will be at Swedish on February 7th.

Dr. Lu and Dr. Aye had a peer-to-peer conversation about the anatomy of the tumor. They are looking at where the blood vessels go to see if Dr. aye can do a lobectomy or if he has to take the entire left lung. He says its better that a 50% the whole left side will have to come out. I appreciate that that was a thoughtful decision.

As I know more, I will let you know. Thank you for hanging with me. Thank you for kind notes, funny and/or inspirational texts, and any small check-ins. Thanks to people like Amy and Dave who cleared massive amounts of snow from my driveway! Every contact bolsters my flagging courage and helps me believe I really can do this.

Thank you all!!

The Wedge

Mark and I traveled over to Seattle last week and I had the wedge surgery on Tuesday. It went well.

We checked into Swedish at 5:30 a.m. and they did the procedure about 7:30. The surgeons used small instruments that they controlled through a video monitor to cut out the wedge of lung and then retrieve it. It made the procedure much less invasive.
At the end they inserted a chest tube, The job of the tube is to help keep the lung inflated and  to drain anything like extra blood from the incisions. It stayed in until an hour before they discharged us on Wednesday.

 We spent one night in the hospital and Mark got to stay in the room with me. Everything went fine. I had very little pain at all and I am healing up really well.

We still do not know what the stuff is/was. But it is gone from my chest now.

Once again I want to thank those who continue to stay in touch with me; who send me tests, or e-mails, or comment on this blog. Some days that contact is what keeps me going. It certainly brightens any day that a friend gets in touch. I know you are all busy with your personal and professional lives, so your reaching out means the world to us! Thank you from the bottom of our hearts!