Runaway Rollercoaster

I feel like I been on a wild, runaway, roller coaster ride for the past three years.  I often refer to this as a journey I wish I wasn't on and the runaway roller coaster is certainly not a ride I would ever choose.  But whatever my wishes are, they didn't come through this time.   So that means that I have to deal with making the best of this "journey" and being able to handle the "runaway roller coaster."

When I was first given the option to apply for a trial by Dr Bhoola, I new that it was just that--a trial for research purposes with the hope that it would produce positive results for me and for others in the future.  I was first going to be on one trial, but there were some problems with my blood results that prevented me from qualifying.  That phone call last Tuesday was one of the hardest I have ever had to deal with..  It is probably the first time throughout this journey, that I was ready to give up and just do what was needed to keep the cancer at bay for as long as possible.  It was a fairly rough day for me and I have always worked so hard at being positive.  They say that one is not given more than they can handle.  I was at a point where I was trying to figure out how I could possibly be given any more and still handle things.  

So Tuesday was "pity party day" for me.  I haven't done that often but I was just feeling that this was it as it the ups and downs become overwhelming.   One minute it seems that there is so much to look forward to and the next is just trying to figure out how to deal with everything.

The pity party lasted the whole day and then I moved on.  When I met with the team at Virginia Piper, they had another trial that they thought might be better for me and where the requirements weren't so stringent,   As my wonderful nurse presented it, she said that this company understands that so much of the previous treatments that people have been through can wreak havoc with so much.  For  example, the high blood pressure that I never had that was caused by one of the medications and not by anything but the medications and this company takes that into account.  That was just one example of the many other things that are off in my body because of treatment.  

I went in yesterday for a blood transfusion which is the first time that I have ever had one before,  They were trying to get my hemoglobin up because once again, many of the medications/treatments caused it to be too low.  Fortunately, it took care of that problem.  So I have been accepted.  I still have to have a  scan and a biopsy that could change some things, but they feel confident.  I told the nurse that I never wanted to go through another day like Tuesday with getting my hopes up.  She told me that she never wanted to make a phone call like that again.  I also told her that I did some research on the company and the trial and it appeared to be a better fit for me (at least in my untrained mind I thought that).   She agreed with me and explained that there weren't any openings when I was in earlier in the week because that was the one she thought would work best for me.  So she and her team made a please and a case to the company for them to give me a spot.  And they did.  It was because they cared enough to pursue alternatives and once again, they are a team that understands treating the whole patient. 

I have to get the scan and biopsy done and then I am scheduled for the first treatment on July 16.  I will be in the hospital for 24 hours the first time.  I am back to being positive and I feel that there is always a reason something happens.   I am hoping that the this is another example of that.  However, I also hope that I don't keep getting tested!  

I feel good about this and feel that despite the awful few days, it will work out for the best.  I feel fine and am able to do just about anything.  As a friend said the other day, if she didn't know I was dealing with all of this, she would never even guess that I had any medical issues.  I am able to continue doing the activities that I enjoy and participate to the fullest.  And I feel strongly that this will work out and I will be able to continue living life to the fullest.   I have a wonderfully supportive husband, my family has stepped up to the plate so many times, and I am blessed with wonderful friends  

Here's to "kicking cancer's butt" and showing this ugly disease it picked the wrong person!  

Signs! Yes, I believe in Signs!

I have always believed in signs and throughout my life I have experienced different times when I felt like something that happened was a sign.  The vast majority of these signs were very positive.  Throughout this "journey that I never wanted to be on", I have been positive but there have been many times where that was very difficult.  Facing something like this took me through a whole range of emotions--some good and some not.  Wanting to be hopeful is important, but facing the reality is also important.  I believe a good attitude helps but there is truly nothing one can do other than how you react and how you present yourself to others.  I know so many people who were wonderful, religious people who prayed and had so many people pray for them and it wasn't meant to be and at the same time, there were a lot of others where that worked.  I also believe that there are no guarantees ever and anything can happen to anyone at anytime.  Living life to the fullest each day is what it is all about whether you are very ill or completely fine.  Each day brings us closer and closer to finding something that can help someone.  

Getting the tough news that the cancer had returned was difficult, but as I have always said, Dr. Bhoola treats the whole person.  He isn't one of these doctors who will do anything to keep a person alive without a quality of life and I appreciate that.   He was positive, yet realistic and gave me several options.  I have written about this previously. 

I felt so good about being accepted into the trial at Virginia Piper.  I know that there is a lot of great research going on right now and to be able to participate in it is a gift to me and hopefully a gift for women in the future.   And I really like my new doctor and can tell he is very dedicated to what he does and extremely knowledgeable.   He told me that he turns down about 85% of requests for trials because he will only work with pharma companies that he believes have integrity among a many other things,  I was very impressed by this.

I have always heard about Virginia Piper but didn't know much about her or the work that the foundation has going on.  I did some research.  Her story of philanthropy is  awesome.  I got to the part where they wrote about the CEO of the Virginia Piper Trust and the gentleman's name is Steve Zablinski.  I know him and the work that he does.  For the past many years, he has been the CEO of St. Vincent de Paul here in Maricopa County.   My wonderful uncle, Matthew Scott, was a founder of the Phoenix St. Vincent de Paul in the 1930's.  Through the years, I attended several functions there with our family and got to know Steve and his work.  I saw how he interacted with the people who came to eat and get medical care there and I could tell what a good human he was.  Several years ago, they named the chapel at the 7th Ave. "campus" after my Uncle Matt.  A few years ago, Dave and I gave our tax credit to them and Steve wrote a short note to me on the  form letter.  So that was the first sign for me,  I believe that Steve would only work for a top notch organization.  I know he has nothing to do with what I am participating in, but it is still a connection or a positive sign to me.

After my first appointment, I found out that I would have a coordinator and a nurse assigned to me who would be with me throughout my time there.  I talked to Aubrey and she couldn't have been nicer.  On Thursday, I met her along with my nurse Pat SHANNON!   Now that's a big connection as Shannon is not a common last name.  She is awesome and loved that we shared the name.  We hit it off right away.  As we talked, it turns out she lives here in Gilbert and not very far away from us. It is probably about a mile away.  I had some paperwork to turn in to them and I somehow had one of my petitions for Governing Board in the middle of it.  So Pat SHANNON signed my petition!  Another huge positive sign in my eyes.

Now I am just waiting on getting a CAT scan scheduled and then thee will be a calendar to I can see what my first 30 days will be like.  I am tied down to being here, but that is okay.   I feel great and feel positive and I am going to carry on like I have for the past three (and the previous 72) and continue to live life to the fullest and be able to continue to serve our community.  It is important to me to be involved and to be able to give back.  Both of my doctors agreed with me!

I look at this as a wonderful opportunity not just for me.  No matter what happens, this will be helpful to the future treatment of this cancer, which has been one of the least researched cancers out there.  

I am anxious to get started and I know that there will probably be some rough days but nothing I haven't experienced before.  Cancer, you don't realize that you picked the wrong old lady.  This old lady doesn't believe in giving up and I will give everything I have.  And hopefully all of these signs will prove that they are positive ones for me!

 

Thank you to my wonderful husband, Dave Uggetti!

I spent the majority of my adult life single.  I was divorced in 1979 when Patrick was about six months old.  It was a very rocky marriage for the seven years we were married with many back and forth tries.  I really wanted my marriage to work, but there was just no way that was going to happen,  Many things have happened since that have proven I made a very poor choice.  The only good thing that came from it are my kids.  Jim was never a father to them and didn't pay child support for the majority of the time.  I could have used the money, but his complete lack of making any effort with my kids was the hard part.  They didn't understand.  I'm not sure they understand now as adults because I certainly don't get it.

Through the years I dated a little bit but nothing that had any promise.  I honestly didn't have time between raising my kids and working.  Plus I had heard too many horror stories about step dads and seen too much of blended families to want that.  

So meeting Dave was not something I ever expected and then to have him be the wonderful human being that he is certainly wasn't expected.  He is so good to me and to my family.  I went from living alone to being with someone 24/7 since we are both retired.  So even though it has been six years, I think it has been way longer than that because of how much time we spend together.  And I mean that in a very positive way.

Not only is he kind, good, honest and just an all around good human being, he has a wonderful family.  I love his cousins and they have become some of the best friends I have ever had.  Everyone has been great to me. However, Chuck, Maura, and Gary are truly special in our lives  

I can't begin to explain what he means to me.  His calmness is certainly good for me!  He just shakes his head at me a lot of the time, but I know that he truly loves me.  To have found this kind of love at my age is a blessing that I never dreamed would  happen.  He is truly one of the good guys and I can't begin to express how much I love him and enjoy his company.

Dave Uggetti, I know you didn't know what you were getting into but thank you for doing that and being by my side during all of the difficult days I have had and showing me a love I didn't know could happen for me.  I love you more each day and I am so thankful to have you by my side,  You are still an example of what Eagle Scout should be 60 years later!!!   You are the best person and it is obvious with the many friends you have who truly care for you.  

I'm Going on "TRIAL"!!!!!!!!!!

This is probably the only time "going on trial" is truly a wonderful occurrence.   The closest I ever got to anything in the legal system was one time I fought a ticket for parking my car in front of the house and apparently I was  parked to close to the stop sign.   I lost and had to pay a fine.  I don't usually criticize police officers, etc., but don't they have anything better to do with their time?   I didn't like being in front of a judge at all even though it was truly not a real trial!

When I meet with Dr. Bhoola, he gave Dave and I so  many options for dealing with the reoccurrence of endometrial cancer.  It was too much information and bad news all at the same time  I finally asked Dr. Bhoola what he would do if it was his wife.  He said he would try to get in on a trial at Virginia Piper Cancer Research Center.  I needed no other information as I trust him implicitly,  I could not have found another doctor who I would have trusted anymore.  He truly cares and is so knowledgeable.  I didn't know this, but gynecologist oncologists are hard to find because of the training they must go through for this specialty.  In addition, he is one of the kindest humans around.   I have found in my limited experience that people who go into oncology are a different kind of person.  I have seen nothing but kindness, empathy and understanding of what a patient is going through.

So the office staff got me scheduled for everything needed to get into Virginia Piper which included blood work, scans and most importantly a biopsy.  It was hard waiting on all of the stars to align. The scheduler at Dr. Bhoola's office was another one who was incredible.  I finally got the call to go in on Monday.  Even though I was anxious, it really wasn't that a long time before I got in.  I have been so lucky to not be put off like I hear from so many others.

Everyone at Virginia Piper were also incredibly kind and nice!  That is important to me.   When you get treated well, I think it makes so much difference.  I already love my new oncologist, Dr. K.  

When I got there he explained that it will be level 1 trial.  What that means is that it has only been tested sucessfully in a petrie dish and then with animals with cancer.  There are no placebos at this level which was a huge plus to me.   They only have about 50 people accepted and only three at a time.  They have a board that meets with all of the patient information and that board decides who qualifies and for what trial.  The board had already met and they had all of my information to use to decide.  And I was "chosen" to be a part of this.  There are only three at a time who get to start so sometimes you have to wait to get the three people.  All the stars were there for me and I start tomorrow!  I asked a lot of questions but there are many more that I have been writing down since.  I was emotionally drained and my tears came freely because I had been preparing myself for it not being a good match for me and just how thankful I am for this opportunity.   No matter what happens, I will know that I have done something to help others.  

I told Dr. K that I am still very active and involved.  He encouraged me to continue to do what I love to do and told me that there is no reason I shouldn't continue my board commitments.  Most of the time, I feel fine.  So I am going to go ahead and run for the board!

So tomorrow can't come fast enough.  I know there will be tough times ahead but I have already faced a lot of those tough times.   Here's to continuing being the feisty, tough old lady who was very well trained by an incredible role model--Margaret Shannon!!  I will always believe that she taught me that. And I also believe that I got the empathy and kindness example from my wonderful Aunt Teresa.   I am blessed!!!!

 

Friendship

 

"We'll be friends forever won't we, Pooh?"  asked Piglet.

"Even longer."  Pooh answered.

This is how I feel about my dear friend, Cecilia Ortiz Kory.   Last week we were able to have breakfast together along with her wonderful husband, Raymond and for a short time, Dave.  We have kept in touch off and on through the years but life gets in the way when you are working and raising a family.  

One summer when we were down in Douglas for the summer, Cecilia and her boys came to visit her parents.  We all went up to the cabin for the day and I remember how much fun all of the kids had.  For us, the cabin brings back so many wonderful memories.  In 1965 I was able to have a surprise birthday party for Cecilia and it was the first surprise party she ever had.  The pictures above are of our guest book and all of our friends who got to go along with us for a day in the outdoors.  I will always be so grateful to my mom and Teresa for always being willing to do things like this for me for my friends because a lot of the work was on them.  It was a special day and my friends always loved to get to go up to the cabin.

Another summer Kerri got to spend time with Cecilia's dad.  He was a  geologist I believe and after he retired he had workshop in the back of their yard where he tumbled rocks and made jewelry.  She loved getting to spend time with him and she still wears the ring that he helped her make that summer.

I first met Cecilia when she and her family moved to Douglas from Nacozari, Sonora.  We were in third grade and they lived a block away from us on 14th St.  We went to Loretto together, then on to DHS and ASU.  We were roommates for a time in college and when you are a roommate of an Ortiz, you get the whole family at different times.  I loved that!

Over the last few years as I have been on the "journey that I didn't want to be on," she was once again such a good and true friend.   She kept in touch all of the time. She would send me cards and different religious mementos that meant a lot to both of us.  I can't ever thank her enough for that.  Until one is on this journey, you don't realize what this means to someone.  I will be forever grateful for her friendship throughout the years, but particularly the past few.  She was there for me and she is one of those friends that you can always count on.  Thank you for your friendship, Cecilia.  You will always hold a special place in my heart for many reasons.  You are truly a gift!

Appointments, Appointments, Appointments..............

 The title of this post speaks for itself!  It seems that is mainly what we do anymore.  Between Dave's back doctor and all of my various doctors, we spend a lot of time going to different appointments.   The good news for him is that he is going to try a fairly new procedure where they implant a stimulator in his back.  He has an MRI on Saturday and then they will try the stimulator for a week.  Both his back specialist and the pain doctor are very supportive of this.  I am happy for him because he loves to golf and this should help him be able to continue to play.  It is more than just a sport for him as it is also such a social sport.  I never realized how social it is, but he makes so many friends because of golf.  

As for me, I finally got into Virginia Piper for this next  Monday.  The two different people that I spoke to there were so incredibly nice.  I did some research on it and they do a lot of different medical research.  According to their website, there are currently about six different trials for endometrial cancer.  I don't think looking forward to it is exactly the right way to describe it, but I am very hopeful and anxious for this appointment.  I continue to feel good for the most part so it's hard to imagine that there is anything no so good going on in my body.

I found out some information about Virginia Piper.  She moved to Phoenix in the 20's I believe.  Her husband was the president of Motorola.  After he died, she married again and after her second husband passed, she started this foundation,  I believe in signs as being positives in my life.  It turns out that the current CEO happens to be someone I know.  Steve Zablinski was the CEO of St. Vincent de Paul for many years.  I got to know him because of my Uncle Matt.  Matt was one of the founders of St. Vincent in Phoenix many years ago.  They named the chapel at their main campus after my Uncle Matt.  Through the years we attended several different activities and I got to know Steve.  A few years back when we gave them a tax credit, he wrote me a personal message on the form letter.  I will not interact with him at all with this, but I look at it as a positive sign.

So as busy as we are with these appointments, it is looking better and better that we are going to be able to get to Montana!  For that I am very anxious!

Ms. Montana Anne Uggetti AKA Mona (For the time being!)

 

When one retires, it is vacation 24/7 with so many choices of causes to get involved with etc. Then because of the “aging” process, sometimes a social life is controlled by doctor appointments! We usually are in Montana by now but we have had to make sure many doctors can make their well deserved salaries! So we are still on hold as to when we will get up to Butte. My little puggy hasn’t been there yet. But she is named Ms. Montana Anne Uggetti also known as Mona. I told her that we may soon have to change her name if we can’t get up there. So Ms. Montana may become Ms. Arizona Anne Uggetti also known as Zona!!!!

The Waiting Game and Other Miscellaneous Feelings

 Probably one of the hardest parts of this "journey I didn't want to be on" is the waiting game.   When I was first diagnosed, my reaction to waiting is far different from what it is today.   For the most part, I have been fortunate to get into different appointments fairly quickly.  However, there are times when I have to wait on scans, visits to other specialists, etc. don't happen overnight.  It has been almost three years since I found out that I had cancer.  The first year I was a mess emotionally if I didn't get in to an appointment right away.   That has completely changed.   I think it must have to do with acceptance.  I now know what I am dealing with and the fact that it is something that there might be answers to and there might not be.  As I said before,  no matter what happens I want a quality of life so that Dave and I can enjoy living our lives like we have since I met him.  In addition, I want to be able to do things with my family and live as full of a life as possible.  I mostly feel good.  I have a few not so great days here and there with pain but for the most part, it is controllable.   

With that being said, I am frustrated that I have had difficulties getting into Virginia Piper for any trials that I might qualify for.  I had biopsies done a little over a week ago, so they have the information that they need.  I have found that one has to advocate for yourself and I do.  I just got off the phone to let Dr. Bhoola's office know that the call I was supposed to get on Friday from Virginia Piper didn't happen.  I know how hard they have worked.

Over the weekend, I spoke with a lady in Florida who works for a cancer organization.  She does research on trials, where they are happening and the efficacy of them.  I was fortunate that my friend, Pam, was able to connect with Dr. Becky.  It was a good conversation and she said that what I am doing now is what all the research says can slow the progress of the "bad" stuff down.  I haven't had any side effects so that is good.  She also said that Arizona is way ahead of other states with trials for this kind of cancer which surprised me--not sure why but Arizona isn't usually ahead of the game in many areas.  She also explained why it is hard to get into places and it has to do with staffing.  It isn't so much the doctors, but nurses and other support people that there is a real shortage of.   I felt really good after talking to her.

I have found out the hard way that I have to be careful what and how I share this "journey" with others.  For the most part, everyone has been incredibly supportive in so many ways.  I am so lucky to have people check in on me just to see how I am.  That means more than I can ever express.

However, there are a few friends who never ask how I am doing and these are good friends.  I don't think they are being mean, but more an avoidance of bad news.  I remember having a couple of dear friends who fought cancer and lost through the years.  I didn't ever want to hear that things weren't going well for them because they meant so much to me.  Selfishly, I didn't want to lose them.  But I had to put those feelings aside because they were more important than me.  

The other one that has blown me away are the few people who aren't supportive of my choices for treatment and even say things.  I have learned to just not tell them much--just the superficial stuff.  I guess that is my avoidance, but this is a very personal choice.  It is also very hurtful.   Facing your own mortality is difficult enough without criticism.   

We have a hard time making plans very far in advance which mainly has to do with doctor appointments and changes in treatment.  It has been interesting when this has happened and people aren't understanding of why we can't make those plans.  I know that they are upset when all of a sudden after hearing from them a couple of times a day, I hear nothing and a few other things which are obvious.  Oh well, I can't do anything about that but protect myself which I will do.

However, these are few and far between.  It just has been difficult because some of these people have been some of my dearest friends through the years.  I have learned that everyone handles things differently and I don't and can't change that.  Once again, the only thing I can do is take care of myself.

I haven't written much on my blog about things, even the good stuff.  I do that with Facebook.   But from now on I am going to try to write more here.  It is easier to find and hopefully my family will have my words down the road about this "journey I didn't ever want to be on."

A Sense of Humor

 I have found through the years that a sense of humor is probably on of the MOST important “qualities” one can have to survive in this world. I always try to find the humor is most things and it has served me well. Laughing is such a good way to release pent up emotions. Today I had an appointment with the Nurse Practitioner at my oncologist’s office. I really like her and have spent way too much time with her these past few years. She was having their new NP shadow her. These appointments can be very tense, but I found a couple of things to laugh about. My NP told the new one, “Sheila is a closet bad girl!” I think that is one of the best compliments I’ve ever had!

Some Difficult News

I just want to share some issues I am having with my health once again.  I had a scan last February which came out clear.  I had another one done about two weeks ago and it is not very good news.   Dave and I saw Dr. Bhoola last Tuesday.  I had seen the results of the scan and new that it was not good.  Unfortunately, it wasn’t good news.  The cancer has returned.  It is interesting in that endometrial cancer goes to other organs but is still endometrial cancer.  Because it was in the lymph nodes to begin with, this has always been a possibility.  The lungs are usually one of the first places it goes.  That is what has happened to me along with some in the liver. I have in the past responded very well to the different kinds of treatment.  The last one I had I did well in terms of the cancer part, but unfortunately I got every bad side effect that can happen.  We stopped it and I won’t take it again as it is not a quality of life.
 
Dr. Bhoola went over several different options of things that can be tried and we talked about quality of life—not quantity.  The first is to do nothing other than what is needed to be comfortable.  And for Dave and I and my family and friends to enjoy life.  I actually feel fine.  However, doing nothing will just mean it continues to progress.
 
He gave me several other options.  Although I was prepared for this, it was a lot of information so I honestly don’t remember what they all are.  I trust him implicitly and don’t feel I could have found any other doctor or facility that I would get the care I have gotten and importantly to me, the way that I am treated by the entire staff every time I go in there.
 
So I asked him what his recommendation would be. What I also admire about him is that he is into you as a “whole” person and is not trying to push all kinds of treatments to keep you alive because he is a doctor.   He is realistic which I agree with.
 
His suggestion is that I get a biopsy done so they can determine the molecular make up of it.  He then wants me to go to the Virginia Piper cancer center here in the valley.  They apparently are doing some really great research on endometrial cancer.  It is the least researched of any other kind of cancer and is the largest cancer diagnosis for women over 60.   (I guess us old ladies are expendable!). They have several trials going on right now that hopefully I can qualify for.  As with anything, it is a trial which means there are no guarantees and they are gathering information on the research they are doing.  He also knows that I am not willing to go through something that greatly reduces the quality of life.   I should be scheduled for the biopsy in the next week or so.  In the meantime, he is putting me on three different meds that don’t have horrible side effects.  I don’t have them yet but should by the end of the day today other than one that has to come from a specialized pharmacy. 
 
So as of right now, Dave and I talked and I am going to give it a try with the understanding that I can stop at any time if it becomes too much.  We will continue to do what we do and live our lives to the fullest as long as I can.
 
We want to go to Montana for the summer, but I worry about the quality of medical care there. He has a friend who did her internship with him who practices in Bozeman which is close to Butte. He intends to get me in with her while we are in Montana.  That was a huge relief to me.
 
Although this is not good news at all, I do see many positives.  I feel good other than some pain but I have good meds for that.  And the ability to be able to hopefully participate in some trials.   I know of several people who have been in a way worse condition than me who have had trials work for them.  It is worth a try because science has come so far and continues to make wonderful progress day by day.   I look at what they did the with COVID vaccine and how quickly they were able to get that going and look at the lives it saved.
 
I am at peace with this even though it is not good news. I have no control over any of it.  I only have control over how I handle it.  We intend to do as much as we can for as long as we can and live our lives to the fullest.  I can talk about this, but sometimes telling the story over and over again is hard and exhausting,  I appreciate those of you who have kept in touch with me and checked on me more than you know.  As I put the FU in FUn, I plan on continuing that as much as possible.   And don’t forget we have lots of room in Montana!  Our only issue right now is not being able to make hard plans.  We will have to do some things at the spur of the moment, etc.
 
I would appreciate prayers, positive thoughts, dancing in the nude at midnight or whatever “floats your boat” so to speak!  My philosophy has always been that life is about living and the way you treat others as being the most important qualities that you can have.  It doesn’t matter what your belief system is, it is how you live your life!  I have always lived my life to the fullest and continue to do so for as long as I can and hope that one of the trials will possibly work for me.  But as I said, I have no control over any of that so whatever happens is what is meant to be.
 
I have been blessed with so many wonderful family members and friends in my life.  I don't know how this all will play out, but it's probably not going to be what I would like.  I am still waiting to hear about the trial.  I had biopsies on Friday and they need that information to determine if anything would work.  I intend to start writing more about the journey that I have been on.   For the most part, the past three years have been good.   Treatment hasn't been fun, but it has been tolerable.   

So stay tuned...