Category: Cancer

Time

It’s a small word for a big topic

I hadn’t realized until I logged in today how long it has actually been since I posted.  If someone would have asked me, I would have said it was last month.  In fact, it was April when I last posted.  I took a minute to think about that, in some ways it didn’t seem possible, but in other ways it seemed like it could have been even longer.  I started to think about what has been going on since then and how I have spent my time.  This is a small piece of what life can feel like, time can easily get away from you or you can be too busy to realize time is moving on or some people just don’t pay attention to time.  I have been especially aware of time since my son was diagnosed with a degenerative condition, his life expectancy was limited, they didn’t think he would live past 16.  I had a friend that had lost a child and when she learned of his diagnosis, she told me to live life, make memories and take pictures.  And that’s what I tried to do with him, it wasn’t always easy, at times because of his health life would be on hold for a while.  But when we could, we went right back to making the most of our time.  When my son’s time ran out it was excruciatingly painful, but I had all those memories and pictures to hold onto and it gave me some comfort.  Still today my memories and all those photos are my most treasured possessions.

When I was diagnosed with stage 4 cancer I was once again reminded how precious time is and I made sure that every day my son and I spent time together.  After my son died, I had a recurrence of my cancer, it wasn’t unexpected, but it was still difficult to hear.  Once again, I was reminded of how short life can be.  This time I took a different approach, I decided that I needed to really think about the things I am willing to spend my time on.  That may sound selfish to some, but it is my time.  I continuously make assessments of what are priorities and what maybe doesn’t deserve my time and I make changes accordingly.  The events in life certainly change, or at least shift, your priorities and one of those priorities is time.

If I was to give advice, I think it would be this: Be present, live in the moment.  Don’t miss a chance to let someone know how you feel.  Celebrate, even the small things in life.  Don’t put things off, that just becomes missed opportunities.  Spend time with the people you love.  And most of all remember that time is a precious commodity, treat it that way.

Pandemic Pandemonium

It’s been about three months since I posted, and so much has happened. I have been struggling with my panic/anxiety. I’ll start with some quick updates from my last post, first the hoarding is better, but not completely gone. Toilet paper and paper towels are still at times very hard to find. Grocery store shelves are still not full, antibacterial wipes and cleaner can be nearly impossible to find be found. I did finally get some hand sanitizer, I felt like I won the lottery! Grocery shopping has become a cross between hide and seek and survivor.

One of the biggest changes is that the economy is opening up, which for people like me that are immunocompromised is scary and doesn’t include us. Under the CDC, state and local guidelines we are still to stay at home. My infectious disease doctor told that these precautions for me will last until at least March of 2021, and she believes it will be extended past that. This has been hard, I feel cut off from people and life. I have used social connections to help me with my agoraphobia, but now that is not an option. It’s funny, when my agoraphobia kept me at home I felt like my life was on pause. But as I could rejoin life I had to deal with the reality that life continued on without me, I felt like I had been left behind. I have continued to deal with that feeling. And now, with the reopening I find myself feeling that all over again. People are going out shopping, getting their haircut, complaining that they can’t get their nails done yet and more. And once again life is moving forward without me.

I have found that the majority of people think that only old people, especially in nursing homes, are the only people at risk, that is not true. There are a lot of people like me, not old, living in our homes but with various conditions that put us at risk. For me it’s two conditions that put me in that category, as I have written about before I am a stage 4 cancer patient and I have Primary Immune Deficiency. I have dealt with my immune problems my whole life, I have learned how to be ‘safe’ and still be able to live a mostly normal life, until now. I think one of the biggest threats to me with the coronavirus is I don’t make antibodies, I never get over anything on my own. My doctors have told me that if I get Covid-19 I probably wouldn’t survive it, that’s a big dose of reality.


Chaos, Confusion and Christmas…..

It’s been a long dry spell between posts, where to begin? Well, since my last post I celebrated my birthday in November, we celebrated a quiet Thanksgiving and I was busy sewing aprons, more on that later. Then I was in a curated boutique at a church, which brought us to all the chaos of Christmas. The normal chaos of Christmas was joined with confusion and deadlines. As I mentioned I was busy sewing aprons, this was something that started the Christmas before. I had made a couple of aprons like my Great Grandmother made and wore for a few friends that cook and bake. Out of that came the suggestion to make them to sell. I decided to name them for my Great Grandma, so I call them Gram C’s Vintage Aprons. I love sharing her apron legacy with others, she was a huge influence in my life. As it says on the hangtag on the aprons, she taught me how to cook and how to wear an apron. Christmas Day I was able to spend time with a very good friend and his family, it was wonderful. So much of the holidays is about family and I don’t have any family. I enjoyed being with his kids and their kids, it felt like Christmas.

Then came New Years, I don’t do resolutions, but I usual have something I am hoping for or hope to do. This year I want to limit the amount of negativity in my life. That sounds like a big goal, but it needs to happen. I am surviving with stage four cancer with a recurrence, the death of my son (my heart), the death of my husband, the loss of my family, agoraphobia, other health issues and my panic and anxiety. I think at this point wanting less negativity is a necessity.

The new year has brought with it more progress on the book, 15 chapters done and I am working on the last three. My hope for this year is to find a publisher. My goal to this point was to finish the book, I didn’t want to leave it unfinished. And now with the finish line is sight, I want to be able to see it published. It’s funny what started out as something I wasn’t sure I really want to do has grown into this huge accomplishment, I am so proud of this project and my hope has always been that it might help someone else.

For more information about the aprons please visit Gram C’s Vintage Aprons Facebook page. http://www.facebook.com/gram.c.vintage.aprons


Oh Wait…Here’s Another Thing……

You know I am no stranger to the idea that life is hard.  But then something comes along and I find myself shaking my head in frustration.  My goal when my son died was to go back to work, I tried to make it happen before I sold our home, but no luck.  Next my plan was to find a job after I moved, but then I was diagnosed with a recurrence of my cancer in the middle of moving.  So now I have been left with a new reality, I need to apply for Social Security disabled widow’s benefits.  This was not what I wanted, but if I have learned anything in life, it is that you really can’t always get what you want.  So I started the process in January of this year and to say that it has been a struggle would be an understatement.  I knew with the first phone call to make the interview appointment it was going to be a difficult process.  The woman on the phone asked if my doctor had told me when I might die……did she seriously say that?  Yes she did.  There were so many things I wanted to say, but I didn’t want to affect my chances.  So I came up with this response–I never asked my doctor that question….not too bad a response on the fly.  Since that first call I have had my interview, had to defend my eligibility to apply, spent time trying to get info on the phone and several trips into the office.  They told me that cancer cases like mine get expedited, but that has not been the case for me.  As of my latest trip to the office this past Thursday, my case has not been assigned to anyone for the medical review and tomorrow it will be 5 weeks since the process started.

The additional stress of this is financial, I am running out of money.  This is especially frustrating to me because I made some bad money decision by trusting the wrong people, I should have known better.  But I can’t change that now.  Looking forward, if a decision isn’t made soon I am going to have to sell my little condo and rent a place so that I have money to live on.  The thought of moving cuts me to the core.  The last move from the home where I raised my son and held his memorial service was devastating.  But I had no choice and I feel like that is where I am again.  I have worked to make my little condo feel like home.  I have included my son here not only in photos, but he has a prominent place in the living room.  I have a trunk with some of his special things in it, and everything else of his is packed in 8 big containers in my garage.

I know what I have to do, I need to stay focused and be persistent, I am.  And I am normally the most optimistic person I know, but this just feels like one thing too many.  I feel like I am fighting for my life and that leaves me with this question–does it really have to be this hard?

It’s Begining to Look a Lot Like……The Holidays…..Again

I can’t figure out where the year has gone!  So much has happened in 2018, both good and bad.  Some things are carrying over into the new year, also good and bad.  I decided that the last two years I felt obligated to do Christmas.  In 2016 I put up the tree because I knew it would be my last Christmas in the house.  And last year I put up the tree because it was the first Christmas in my new house.  This year I wanted Christmas to feel like a choice.  So I have put a tree and I have tried to ‘do’ Christmas.  The holidays are really tough since Robby is gone and I know they will never be the same.  So this year I am starting my search for the new normal for holidays.  There’s got to be a way that’s at least a little less painful.

I did some things I hadn’t done for a while, like sewing and painting.  I had forgotten how much I enjoyed making things.  I made a couple of aprons like my Great Grandma Clare wore.  She has been on my mind a lot this Christmas.  I spent a lot of time with her growing up and she taught me so many things like cooking, baking, how to wear and apron and about the power of positive thinking.  I find myself missing my family this year and the realization that my family traditions end with me has left me sad.

But now with Christmas behind me, I am looking forward to New Years and the possibilities that a new year can bring.

One Year…..What a Year

Well I have survived the first year (actually almost a year and a half) in my new place.  It has been quite the year, it has included my cancer recurrence, the second birthday Robby wasn’t here for, the second anniversary of his death, a failed friendship and a new relationship.  I’ll start where I left off last year, I am feeling more at home here, that doesn’t mean I don’t miss the old house.  I think there will always be part of me that will miss that house, so many years and so many memories!

I finished my chemotherapy and had surgery to remove the tumor.  Now I am back on the three month plan with my oncologist.  She believes that we are going to be in a pattern where we will find something, treat it and I will be okay for a short time.  Then we will find something, treat it and I will for okay for a short time……….  This time my tumor was sent for genetic testing, which revealed another issue, I am BRC-2 positive.  So now I am in the high risk breast cancer program.  It also puts me at risk for other various cancers.  I have decided since I finished treatment that I will do all my monitoring, but I refuse to make my life all about cancer.

June is not my favorite month and this year I feel like it started in May.  Of course May 30th is when my mom died, 8 years ago.  Then June 5th, Robby’s birthday, kicked my butt! A very close friend from my support group came over and I shared pictures, video and stories of Robby and that felt good.  Another friend came and brought cupcakes from the bakery where we always got Robby’s cake.  His birthday seemed harder this year, but last year I was selling the house and moving, which provided some distraction.  I know it will never be easier, but I didn’t expect it to be worse.  Then there was June 11th, the anniversary of the day he died.  And of course all the holidays, they are difficult, but I have made more of an effort this year to face them.

I have been working on the book a lot.  I think my recurrence last year has motivated me, I really want to finish it.  I feel even more excitement about the book and can’t wait to see it published.  I am going to be posting more often on here.  I know I have said that before, but with my renewed dedication to the book, I feel that same dedication about this blog.

 

Here I Go Again!!

6186bd8d88ac604dda34a4e41a2c4d39l-m7xd-w1020_h770_q80It has been such a long time since I posted, so I will start with a couple of updates.  I am in the new condo and the work is mostly done, only a few small few things left to finish. It is starting to feel like home, different but home!!  I bought a wood trunk and created a space for Robby, I placed a some of his things in it.  I like the fact that he has presence in the new place!  The rest of his things are in 8 storage containers in my garage.

Now, for the newest development I had starting have some symptoms that concerned my oncologist before the move. She ran multiple test but couldn’t find anything.  She did a lab test for my cancer marker and it was elevated, so she finally did a PET scan after the move and she found a recurrence of my cancer.  So we started chemo first to try and control spreading and after my third cycle she will repeat my scan and do surgery to try to remove the cancer. As for a prognosis, well we will know more after the next scan and surgery, but it is not great.  She explained that a recurrence this far out from my last chemo is considered incurable, but she wants to see if I can get at least part way back to where I have been with my cancer. She feels I may be starting a pattern where they find something and treat it, then I am ok for a short time and then they find something and they treat it………..

So I had my first chemo on July 24th and my second one was today.  This has brought back so many memories, both good and bad.  While I miss Robby, I am glad he doesn’t have to go through this again, I know he didn’t understand the first time and that wouldn’t be any better this time.  But I also miss the nurses, not just because of the help they gave me, but I miss their support, humor and caring.  I especially miss the nurse that was always there on my worst chemo days, actually I miss him all the time.  But life changes and people move on and I just have to try and deal with that!

The strangest thing about all this is my anxiety hasn’t been that bad, I think it is because my doctor was so honest in the beginning about my risk for a recurrence. Don’t get me wrong I am not ok with this, and I have trouble dealing with the emotional side, but knowing this would probably happen reduced the shock factor.

 

Reality Bites

Well it has been another long gap between posts, life has been…..well…..insane!  Usually my life is crazy, but it has reached a whole new level.  Where to start….the house is still on the market.  I knew it would be a difficult process to sell the house and move, but I never dreamed it would take this long to sell.  The stress of this and my financial situation are really taking a toll on my health, but I just keep hoping it will be over soon.

Speaking of my health, I have been having some test done with my oncologist.   I have been having some symptoms and she is trying to determine if it may be a recurrence of my cancer.  I tried but can’t stress about it…..it is the one thing too many!  I can’t change what happens, so I will just wait and see.

Then there is Robby….oh how I miss him!  It feels like I miss him even more now.  There is a huge painful void in my life and my heart, nothing can fill it and nothing can fix it.  I am scared how I will deal with the anniversary of his death in June.  So far I haven’t done well with any holidays, or even days like today.  It was one year ago today that he was admitted to the hospital for that horrific 31 day stay that started him down the path that ended in his death.  There are days when I think the pain of his loss with just consume me.  I find myself want to talk with the people there that night he passed, or at least the ones still speaking to me, I feel like they understand.  Most nights I still have trouble sleeping and am back sleeping most nights with the lights on, a subtle reminder of the ‘new’ reality.

Friends…..or maybe not

This is life lesson number….I have lost track.  Since my son passed a large number of my friends have gone missing.  I have tried to understand why? or what happened?  I have no idea, but my ‘sister’ told me that maybe they don’t know what to say.  My response was they don’t have to say anything….but then I guess that is what they are doing.

The other unexplained thing has been a friendship I thought I had with one of my son’s nurses, but again I was apparently wrong.  This nurse was with us for over four years, in good times and bad.  We shared all the holidays, birthdays, ER visits, lunches, outings, shopping, doctor’s appointments, medical test, procedures, my surgery and chemo-all 18 cycles.  Then there are all the things that went beyond the job, like our day trip to San Diego and all the times this nurse stayed with Robby after the end of the shift so I could go to practice parties at dance or to hear my friend’s band play.  And this nurse was there all night at the hospital when Robby passed and was around after-we went to dinner, talked and even took me take care of some things that needed to be done.

But now….silence.  I have tried to text, but nothing.  So finally I decided to push the issue by texting the following:  I haven’t texted you because I feel like you  don’t want to hear from me-am I right?   No response.  So a friend of mine talked to this nurse and explained that it would be best to just say what they want, but no the response back was that no answer is an answer…..seriously?  So I texted again and said I understand no answer is an answer-whatever.  It never felt like it was just about the job until now.  So don’t worry I wont bother you again.  And of course no answer.

This has been painful, I thought this person was a friend, certainly felt like a family member and I trusted this nurse with the most important thing in the world to me, my son, not something I do easily.  So this really hurts, especially on top of everything else that has happened.  But I still just want to understand what happened, not that it will change anything.

Time Flys……

I have not posted for a while, who ever said life gets in the way of other plans was right.  I have been involved in several health issues, luckily not my cancer-at least not as of today.  Sometimes it feels like all I do is run from doctor to doctor and test to test-I finally could not attempt to coordinate this myself, so I found a new primary care doctor.  She is fabulous, I knew right away I liked her, but she has exceeded any expectations I had about a new doctor.  She is busy studying my records, talking to my specialist, calling to check on me and putting together a plan for my healthcare.  It has truly made me feel like a weight has been lifted. 

Many other things have happened since my last post.  On June 5th we celebrated my son, Robby’s 29th birthday-so far he has exceeded his life expectancy by 13 years.  Every year on his birthday I am grateful for the gift of another year with him.  Good news-I get another three months of no chemo!!!!   

My anxiety has been ok amazingly enough, stress….well that’s another story.  When I saw my new primary care doctor she asked me a lot of questions, one being about if I get depressed-I told her no, I do get overwhelmed.  And that is where I find myself most of the time right now.  My health issues are just part of my life, there is also my son, taking care of the house, coordinating some repairs, going through generations of stuff that has ended up with me and making decisions like whether or not to move.  I can’t even keep the yard watered.  But after being mad at myself for not being able to get everything done, I have decided to try to just do my best.  After all, that’s really all I can do anyway!!