Ongoing Experience of a Cancer Diagnosis-My Niece Eloquent Words

About a month ago my niece, Brittany posted her thoughts and feeling regarding the end of her son’s (Ward) chemotherapy, the removal of the port and what it feel like to be a family that has survived the initial phase of cancer treatment, in a way too young boy (diagnosed at 1 1/2 years of age). I wanted to share it with you because it is poignant and real. I get this as a cancer survivor. I get this as someone who saw their husband die from the disease. I get it and yet I don’t. Each of our experiences with this diagnosis are just a wee bit different. Here is what I know-the diagnosis of cancer sucks. Plain and simple. Yet, for those of us who survive we each must find a way to move on, figure out a new norm and try to remember to live and breath every day.

Brittany’s Caring Bridge Note.

“And just like he rang the bell, chemotherapy ended, a scan was officially clear and all cheered.

Except me.

Why?

I want to breathe out, I have been holding my breath since December 8, 2017 at 10:30 a.m.

I thought this was THE end.  But it’s not.  It is simply AN end.  This is the beginning for a new phase of cancer, living scan to scan.

His name is off the prayer list, the cards won’t come anymore, we won’t see our doctors weekly, and the average friend thinks we are done, praise God.  The only thing that will keep coming is advice, a blessing and a curse.

There is no back to normal, we live now as a family traumatized by cancer.

The life we used to live meant we’d be planning a vacation and buying plane tickets, but now I count how many scans are between us and that trip, and how many times do we have to all hold our breath and hope to hear the words, “the scan is clear” again.

The life we used to live included parties, lots of summer parties.  But now parties make me anxious. Who is coming?  Are they sick? Do they know he had cancer?  Will they ask the hard questions?  Will I be triggered into anxiety by something new I don’t even know will trigger me?

The life we used to live included trust.  Now I ask do I trust his doctors?  Do I trust my decision-making?  Do I trust we can keep living?  Do I trust that the floor won’t crumble beneath us?

December to May we lived in triage.

We woke up, put on our pants, took a deep breath and did the emergency work the doctors guided us to do.  We showed up on time, we held him, we medicated him, we cleaned up the messes, we hugged each other, we cried when necessary, and we loved harder than we ever loved before.

But the triage phase is over.  We have paused.  We look back.  We look forward. We look inside.

When will we breathe out?

It may never be all at once.  But we will slowly exhale over the years with each new day, each giggle, each birthday, and each milestone.  We will slowly exhale each clear scan and each year further from cancer.

Hope and love will remind us to breathe in the meantime.”

On the Move, a Family Visit & Cancer

After a long and somewhat grueling drive across two thirds of the country, I made it to Ohio two weeks past. I found the drive grueling because I could not meander. I love to meander the backroads. I was on a mission to reach family in northern Ohio. So I pushed on.

It has been a good visit. I spent a week with my niece, Brittany, her husband, Trip and their toddler, Ward. I arrived to help this young family, while Ward is undergoing chemotherapy for childhood cancer. Well that sucks. Elsie and I got settled in to the spare bedroom and I met my grand nephew for the first time. And what a cutie he is.

Thomas the Train

I forgot how exhausting a one and half year old can be. I got up early and by the time I went to bed at night I was exhausted. As adults our main job is to entertain a young somewhat housebound toddler. It is hard to be out and about when one is immuno-compromised. I read books, put together puzzles, played numerous kinds of games and watched Thomas the Train many, many times. One knows when they have watched Thomas the Train one too many times. You know the characters by name, you know the plot and try not to roll your eyes when a little one asks to see the same movie three times in one day. 🙄

Brittany and I have had time to share our cancer stories and the stress that accompanies this diagnosis. There are a few clubs I wish I had never joined. The cancer club is definitely one of them. Cancer is a very personal diagnosis. The physical diagnosis is only a small part of the broad picture that cancer plays in someone’s life. Each diagnosis of cancer carries it’s own story. Each story is different. I believe that only those who have been slammed with this diagnosis can understand each other’s story on a different level than those who have not had that experience. We shared stories. Brittany asked questions about my diagnosis (breast cancer) and Jim’s. For those of you who are new to this page, Jim, my husband, died from metastasis of a salivary gland cancer over five years ago. All I can do is be honest with her. All I can do is support her and her husband’s process. And amid the stress, we can have fun and laugh and go out for a beer. The stress is not always visible but remains a presence even if lingering in the recesses of our daily lives.

Ward Rocking His Last Weekly Chemo

The good news is that Ward has completed ten weeks of weekly chemotherapy. He now moves on to chemo once every three weeks and will finish up in late May or early June. The story doesn’t stop there. He will continue to have CT scans at intervals for an undetermined time. Although cancer will recess into the further quiet reaches of the mind the stress revives with each doctor appointment or scan. All we can do is be there for each other.

Elsie and I moved into a lovely old hotel near my family. Grandma from Florida arrived today. She moved into the Porch house and we moved nearby. As it has sleeted and rained outside, we have been having a quiet day inside.  It is time to catch up and rest and plan.

I will be here for another week connecting with my sister, Ruth and continuing to support Brittany, Trip and Ward. Then I will begin to meander. I expect to be in northern New Jersey in early April to visit my other sister and plan time to visit friends as I travel in that direction. I did not expect to be in this part of the country, yet here I am. I want to make the best of it and it gives me the opportunity to visit and see places that I usually would not direct myself towards. Why???? Because I love the west and I miss it when I am gone. While the weather is cold and wet here in Ohio, I miss it even more. I will be heading west again sometime this spring. Those wide open spaces continue to call my name. How did a girl from Delaware end up calling the west home? Well this photo below may demonstrate a reason why.

Until I head west again, I will enjoy my time here in the east with family and friends. Life is just one big adventure.

Getting Ready to Move

I am in packing mode. Yes indeed, Miss Elsie and I are moving back into the RV on Wednesday. I am nesting. I am packing and sorting and rearranging. It is amazing how spread out one can become when they move into a place with space. Where did all this stuff come from and how did I get it all in my rig?

Pacific Beach

It will  be hard to leave the beach. I have really liked it here. Every day I walk to the bay, it is only two blocks away. About three times a week I walk the few miles to the ocean. It has been a tough existence (sic). The traveling gene is calling and I am heading out.

I have accomplished a lot in my three months here.

  • The dental work is done. Yay!!!! I have two new teeth and one is bionic 😏. Just kidding. I may be financially a little poorer, yet I have two shiny new teeth that I can show off.
  • Taxes are in process. They don’t need me to be present to finish them up.
  • All annual medical appointments are done. It is good to leave knowing I have a clean bill of health.
  • After many visits, chiropractic, massage, myofascial release, and acupuncture my back is feeling soooo….much better. I am seriously going to attempt to stay upright. No more falls are allowed, off my bike, off burros, or slipping on the sidewalk. Ay Yi Yi.
  • My Roadtrek has been checked out and inspected and fixed and is ready to roll.
  • My scooter has been tuned up and is back in my storage unit, ready for my next visit.
  • Thanks to the help of my therapist and the psychiatrist who orders my meds, I am emotionally feeling a bit more alive and ready to face the world. Thank gosh the sunlit days are getting longer, it helps my attitude so much.
  • I have had the opportunity to visit with friends. I have even made a few new ones. Sweet.
  • I finally found that document that was hiding in the dregs of my storage locker. Whew.

Shortly after Jim died, I started a scholarship in his name at Grossmont Community College. The accomplishment I feel strongest and happiest about, has to do with the scholarship. I donated the remaining amount of money needed to make this a perpetual scholarship. This scholarship will now continue indefinitely. Donations will still be greatly appreciated and the Go Fund Me site will remain on this blog page. It has taken the pressure off of me to raise the money needed. It feels very good to know that I have accomplished this very important goal. I have not done this alone. I have done this with the support of so many of you who gave either directly to the college or the Go Fund Me site. It was a team effort all the way. And I thank you.

I know there is more I could list here, these are the ones that come to mind at the present. Now my mental direction is shifting and getting ready to travel.

Ward

Where am I going? I am going to be driving across the southern part of the USA, and plan to be in Ohio by the 7th of March. I am going to help support my niece, Brittany and her husband, Trip with their son, one and half  year old, Ward. I posted about him back in December. Ward was diagnosed with a Wilm’s tumor in December. Since then he has had his right kidney and the tumor removed. He is now going through 21 weeks of chemotherapy. My sister, Ruth has been staying with them but she needs to head home for a short trip. I am going to be her replacement while she goes home. It is good that this young family has as much support as they can get.

I am going to enjoy meeting Ward. I have yet to meet him in a person. My personal hope for this time is that I might be able to relieve Brittany’s and Trip’s stress just a wee bit. This is what family and friends do for each other. We all help the best way we can. For me it has given me a direction when I get on-the-road.

I am off to pack some more. Stay tuned. The adventure continues.

 

Preparing For the End of Winter

I would like to express my gratitude to all the responses I received from my last post “Struggling Through Winter”. All of your comments were so supportive and helpful. I have read through them more than once. It has eased the feeling of aloneness I felt this winter. It has reminded me, once again, that those of us who struggle with depression and sadness are not alone. I am forever grateful to all of you.

As the daylight hours lengthen I have found I have more energy and interest in the world around me. And, I am beginning to prepare…prepare to move back into my rig and begin the life of a nomad, once again.

I wasn’t sure what direction I was heading when I left the bay and ocean, in San Diego. I kept waiting it out, in hopes that a small “aha moment” would appear and I would have it figured out. I now know my first destination. I am going to driving across the southern United States and then cutting north to Ohio by the second week in March. I leave my rental on February 28th. I will spend a few days at a campground, just to adjust and then I am on my way.

For those who have been following my blog, you may be aware that my one and half year old great nephew, Ward, was diagnosed with a Wilms tumor right before Christmas. After successfully removing the tumor and kidney, he recovered and is now in the process of receiving chemotherapy for several months. His family is adjust to this unexpected time in their lives. This is not an easy adjustment and they certainly can use all the support they can get.

My sister, Grandma to Ward, has been in Ohio  since the tumor was discovered. She is in need of returning home. I am going to be helping my niece and her husband out for a while. I will now have time to meet and get to know my great nephew. I am looking forward to meeting this little one and loving my niece and her husband.

This is what family does for each other. We may not always agree, or get along but when any of us struggle, my family is there to support and love each other. It is my honor to actively support and love this lovely young family.

As February begins to wind down, I am getting busy with my Roadtrek. I am getting it cleaned up and completing  all my little and medium size projects in the rig. I am cleaning, making lists and starting to figure out what I want to take with me and what will return to my storage locker.

Miss Elsie the Cat is making her own checklist. She wants to make sure she has all her creature comforts with her. 

I am looking forward to being on the move. I am looking forward to spending time with my niece and her family. I am looking forward to exploring places I have not been before. I am looking forward to meeting people along the way and visiting with friends. I am looking forward to figuring out my spring and summer. I am looking forward. Looking forward means that depression is lessening and I am entering back into life. Oh I am so glad for this. It has been a long few months.

Next winter I might go to New Zealand so I can experience summer all year around. 🌞

Stay tuned—-Life is picking up.

 

 

 

PTSD and Life Experiences

In mid-December I had my annual checkup with my surgeon and oncologist.

In 2010 I was diagnosed with breast cancer. My initial reaction to this news was anger, furious anger. I was mad about having my life interrupted by a tiny, small lump in my breast. I believe that the anger masked the fear that this diagnosis instantly creates in most people who receive this diagnosis.

The good news is, that I am now eight years out and going well and strong. Some things changed due to this diagnosis. I watch what I eat, I am not perfect but I manage to pay a bit more attention to my diet. I exercise regularly. And each day I am thankful for one more day on this planet.

Then Jim got diagnosed with cancer. It was different this time. I was not angry. I was strong. Yet when he got diagnosed with the metastasis from the original cancer, I had a different reaction. Even when he was well, I found I was enacting, in my head, how to live without him. It was at this point, feeling guilty for creating this alternate life, that I decided to go into therapy. I still see my counselor for a check up a few times a year. It is good to check in.

When I had my appointment with my surgeon in December, I told him that there are just some months I cannot do my self breast exam. It is fear that stops me. What if I find something? What do I do? How can I do this again? He was the first person to mention that I had a little bit of PTSD (post traumatic stress disorder). He also informed me that most people, after any major life altering situations, have a bit of PTSD. Wow, I had never heard this before. It makes sense. He told me that it is OK to miss months. It is OK.

It is OK to acknowledge that I am human. It is OK to have PTSD. Giving this unknown stress a name has been helpful for me. Ah, here comes my ally, “fear”. Now I understand a bit more about my ally. The more that I can learn about fear the less of hold it has on me. I refuse to allow fear to take over. I don’t have time for it. As I learn more about fear,  the less it surfaces in my life. Maybe this knowledge will let me be kinder to myself. Hopefully,  I can let go of the guilt when I miss that important exam. Now there is one less hold fear has on me.

I really like my team of doctors. That is important. I love that my surgeon comes in the exam room, sits down and talks with me as if we are old friends. We catch up. We share pictures and stories. He is professional and kind. My oncologist is also a delight. She is smart and wise and she understands that fear. Why? She has had cancer. All my visits end with a hug and I find myself relax and feel like I am being loved and supported. I am ready to face another year.

PTSD is a diagnosis. I have often thought we all are walking wounded. We are wounded from life experiences. It is normal, it is life. We have good wounds and bad wounds. I think the good ones way outnumber the bad ones. Hopefully this knowledge will help me be kinder to myself, and to others, a little more patient and forgiving.

 

Being My Own Advocate for Everything

And...Do It With Kindness & Compassion

And…Do It With Kindness & Compassion

When I was a registered nurse, I knew how important it was for the patient or their families to advocate for good health care. If they could not do it themselves then it became important to find someone who was willing to be in this role. It could be a family member, a close friend, a social worker and of course, the nurse. The main part of my career was in pediatric medicine. I often found myself functioning as an advocate for my wee patient’s family. It is not easy to  maneuver your way through the health care system.

Back in the early 90’s I found myself on the other side of my career. I had to have surgery. At that time in my life I was certified as a Healing Touch Practitioner and strongly believed in using all forms of the healing arts to get back to a good state of health as possible. I still do. Before I even went into the hospital I found myself setting up my team around me. I called the hospital ahead of time and told them I would be having energy healers coming in post-op to help. I wanted to have un-interrupted time with these healers. They complied. They even gave me a private room. Because I was not fond of the anesthesiologist I was assigned I asked for and got another one. Prior to surgery I met everyone who would be in the surgical suite (doesn’t that sound classy?). I had my own music playing during surgery. When I was back in my room there was Jim and a Healing Touch practitioner waiting. I was out of the hospital in two days and my recovery was swift at home. I was hiking in Yellowstone National Park three weeks later.

It did not stop there. When the bills started to come in, I called and made arrangements for paying. When all these different entities found out I was self pay and I was paying cash up front, I was given discounts (some were substantial), from the hospital to the anesthesiologist and the doctor.

If I had not been advocating for myself I am pretty sure that some of the options I was given would not have been offered.

Fast forward to 2010 when I was diagnosed with breast cancer.  Jim and I, both took on the role of advocate. Jim and I were always a team. I pretty much chose my team that was around me for that year. I had my list of questions ready for everyone. Although it was not the best of times in my life I believe it went much better because I was involved and was part of the team. My decisions were heard and respected. I was not looking in from the outside.

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Jim and I again, took on the role of self advocacy when he was diagnosed with cancer and then the metastasis. It helped that we pretty much liked the team that we were assigned. We dismissed one oncologist we did not care for. All we had to do was ask. I always felt like we were part of the team. Don’t get me wrong, we relied on the knowledge of those around us. By being clear with our questions and our needs our team was able to meet our needs and often gave more than what we expected.

When Jim was diagnosed with the metastasis, I immediately asked for a social worker to be part of the team. With her help she guided us through some hard decisions. I cried on her shoulder more than once.

Why am I telling you this? Well it is my blog. (just lightening up the topic). Since before Jim’s death I have been advocating for myself. From my breast cancer diagnosis to Jim’s death was about three and a half years. Emotionally it has been hard. When I first was diagnosed with breast cancer, I went into therapy. When Jim was diagnosed I went back again. I have been in and out of therapy ever since.

When I left to travel for the summer I ended my relationship with my psychologist. I continued to feel good through Christmas.

And then it hit. January was, emotionally, a hard month for me. Despite the friends, despite work, despite that it is over three years since Jim died and despite the anti-depressants I have been on since before the above death, January was a really, really hard month. I know I could have struggled through on my own but instead I decided to advocate for myself and ask for what I needed. I set up visits with the psychiatrist, the psychologist and my acupuncturist (I have been working with her regarding grief issues since Jim’s death). I added in a massage. And you know what? I am feeling better. I am glad that I recognized I needed help. I am glad I was not afraid to ask. Asking for help does not mean I am weak or crazy or any of the other stereotypes that are still so often associated with counseling. Asking for help implies strength.

images-2

I also am glad for my friends. Without them I would have been feeling terribly alone and frightened. The night I posted the blog about selling the bed, Cat, a friend from Long Island called. She took one look at the blog and recognized that things were not good. We talked for over an hour. Her friendship and compassion and humor helped that night. All my friends near and far, continue to support and help. I am beyond grateful for each and every one of them.

I am now back in therapy. It is a smart move as I am slowly moving forward with the sale of the house. That will be another post. I have given myself a few challenges which get me out of the house and sometimes out of my comfort zone. I talk to my friends and I listen to them as well. It is good to remember we are all going through our own stuff. It makes me feel a little less alone in the world to be reminded of this. I believe that we humans will always go through the good and the bad. Periods of struggle come with growth and change. If I can accept that it does make life a little easier on me.

I will continue to advocate for myself in many ways, taxes, interpreting bids for work on the house, financially and I will always advocate for my health care.

Another Year-Three to be Exact

Jim ready to Fly to Baja

Jim ready to Fly to Baja

This Saturday, October 17th will mark the third anniversary of Jim’s death. For those of you who don’t know, my husband, Jim died from cancer just past his 60th birthday.

It is a funny thing, sometimes it feels like three years or more and in some ways it feels like yesterday. Henry a friend and fellow runner, Jim was a runner, said last weekend he still expects to see him come around the corner for their Saturday morning run at the beach. There are times I still think he is coming home. I know better yet he still is a presence. Sigh

In lieu of a big celebration to honor his passing, shortly after his death I created a scholarship in his name at Grossmont College where he dedicated most of his work life before retirement.

He originally was the Director of Admissions and Record. He ended his career there as the Dean of Counseling and Student Services. He was absolutely dedicated to the students and his staff. Even when people were upset with decisions he made, I never knew anyone who did not like and respect him.

Usually at this time of the year I send out an annual plea to support this scholarship with your end of the year, tax deductible donations. I am trying to raise $25,000 to create a perpetual scholarship where no one will have to donate again and the scholarship will remain there for a long time to come. The scholarship, in the fall goes to student studying the arts. In the spring it helps a student studying the social sciences.

This year is going to be a bit different and here is why.

Jennifer

Jennifer

Jennifer DeMarco is a friend of mine. She was also Jim’s and my yoga teacher and mentor for several semesters at the college. I can’t even begin to tell you how much she has affected both of us and her other  students. She makes them think,change and broaden their thinking. Yoga is not just her job, it is her passion. She is an adjunct professor, meaning she teaches at more than one school and is considered part time and has little to no insurance.

She was recently diagnosed with ovarian cancer and will be having surgery tomorrow, Friday, October 16. Her son has set up a site to raise money to help her with the financial side of dealing with a tough diagnosis. So far they have raised over $9000. However, we all know cancer treatment costs way more than this.

Jennifer DeMarco

This year when you consider gifting, please keep Jennifer in mind, she can use all the support that any of are willing to offer her. Above is a link to the fund raising site. Click on Jennifer’s name to donate to a very good cause, to help a very good person.

If you would like to make an end of the year donation to the Jim Fenningham Memorial Scholarship, which would be gratefully appreciated, you have two ways to do this.

  • Click on the GoFundMe button on the left side of the blog page.
  • To contribute directly to Grossmont College, please make checks payable to:

Foundation for Grossmont & Cuyamaca Colleges (FGCC)
Mention that the contribution is for The Jim Fenningham Memorial Scholarship

Mail contributions to:
Scholarship Specialist
Financial Aid Office
8800 Grossmont College Dr
El Cajon, CA 92020-1799
Tax Deductible Contributions per section 501 (c) (3) of the IRS Code; EIN 45-2692818

Jim & Janet before the trip

You can also donate to both causes. There is no limit to giving. There are so many causes that need help and I know for most of us we have to use our money wisely. My feelings on giving is to give to what you feel most passionate about, but give. If it is a little, good. If it is a significant size donation, good.

It makes a heart feel good to give and it certainly is appreciated.