Updates & Plans

I am now three weeks out from my Radioactive Iodine treatment. It was much harder than I had anticipated, yet I am doing well and recovering on my own timeline. I now have to remind myself it is time to figure out how to get back to normal, whatever that is. Each day I am a little less tired and I begin to think about the future at least a little.

I have been getting questions from friends near and far, regarding how I am doing. Now that February and the first two weeks in March are over, I am realizing that I can begin to consider my future. I still deal with tinnitus but after a visit to my acupuncturist, Gayle the humming is a bit quieter. I appreciate that the birds don’t have to compete for my attention so much.

I am officially not glowing however, the Radioactive Iodine will continue to make it’s way out of my body for eighty days. I can still set off Geiger Counters and alarms at the borders. I have a card I need to carry with me until mid-May that I present if I am stopped anywhere. I will probably set off alarms if I drive into Arizona. I continue to do what I need to do to stay healthy. Drinking a lot of water is still first on the list. Getting enough rest is another.

I still have to wait until early April to have my labs drawn. These labs will tell if I am on the correct dose of Synthroid or whether I need to change it up, again. I will also get a Thyrogen level, which should be close to 0. I have had my full body scan which is normal. Yes!!! If all goes well then I am free to go for hopefully another year.

What is next? Well isn’t that just a loaded question. I have been offered a great opportunity to house-sit for friends on Whidbey Island, off the coast of Seattle for six months. Oooh, what is a girl to do? I am still in the considering phase but each day that I ponder this, I am more and more inclined to accept this offer.

Two years ago, Elsie (the still missing kitty) and I spent a summer in the northwest. I really liked it. I liked the small towns. I liked the people. I liked the access to the water and the mountains as well. I have been considering changing up my travel methods and have begun to plan to stay in places for longer so I can determine where I might want to settle. My first thought was to find a rental in Monterey. I love it there. Then this opportunity arose and well a woman can change her mind.

I started to write this post about a week ago. So much has changed in that time. I am holed up like so many in this country in the safety of my rig. I have wonderful friends in San Diego. Yvonne has kindly offered me her driveway for the past week or so. I sit on the top of a small hill, secure from the world, and have been practicing social isolation in the best of forms. Some mornings, I meet Yvonne in her hot tub. We have been catching up on movies and reality TV. Another day I drove to my friend, Nancy’s house and happily weeded in her front yard for three hours. I have been enjoying quiet and healing time.

Today, I am getting ready to move. My friends, Cynthia and Ward, who have helped me through all things Thyroid Cancer related are welcoming me back to their home. Several years ago I fell while hiking in the desert and broke my right ankle. I had to be off of that leg for seven weeks. I remember how hard it was to adjust to being down one leg, especially for the first few weeks. It would have been so much easier to have someone help me while I got used to my new temporary life. Tomorrow, Cynthia is going to have elective surgery on her foot. She will be non-weight bearing for five weeks. I have offered to help her and her husband out for a few weeks until they have their temporary lifestyle figured out.

This is what friends do for each other. This is all we can do for each other. We can lovingly and supportively help each other out. We can make life easier for ourselves and for others. This is what we do. Practicing kindness and caring is all I can do for myself and others. Even better is allowing myself to accept help and support and put my innate stubbornness on the back burner. So I am off to enjoy my friend’s company and help out the best way I know how. Maybe I will be able to learn a few new crochet stitches (Cynthia is my crochet mentor)  while I enjoy the company of my friends. And…I will continue to give my self the time I need to heal and gain strength.

For those of you who have asked or wondered, I am doing OK. I am grateful for your concern and questions. I am grateful for my friends. Thank you, Thank you, Thank you.

How I Am Doing, Friendship & More

Last Wednesday I took the Radioactive Iodine pills and immediately went into isolation. Everyone said it was easy. I would have no problems and I would be fine.

Here is what I want you to know. This Has Not Been Easy!!!!! Here is what happens when I have no thyroid hormone in my body. I took the pill at 10:30 a.m. By 4 p.m. I developed a ringing in my ears. It was more like a high pitched squeal. And I bottomed out. I have been exhausted and lacking in energy. But the ears are a big deal.

Finally, on Friday my endocrinologist ordered me back on my meds a day early. Hypothyroidism can create tinnitus (ringing in the ears). My squealy friend is still with me and I am exhausted often.

Sunset Over Mission Bay

I am patiently waiting for the tinnitus to go away. I continue to drink lots and lots of fluids and I push myself to take a short walk every day. Tonight I got far enough to see a beautiful sunset over Mission Bay. That certainly picks up my spirits.

This too shall pass. I am not complaining, I just thought you might like to know how I am doing.

I really can’t complain. I am camped at the end of a culdesac or driveway. It is private and pretty when the afternoon sun shines through my rig. I am slowly getting my taxes together and I finished and mailed in my California ballot. I am getting things done.

My friends, Cynthia and Ward, have gone way beyond being good friends and hosts. They designated a downstairs bathroom to me so I did not have to worry about using my bathroom in the rig for the past 5 days. I often slip through the front door with my key and they don’t even know I am in the house. It has worked out well.

This is a sign of true friendship, really true friendship. I am overwhelmed and grateful for their graciousness and caring for me. They have let me slip into their lives without a second thought, as far as I can tell. I am grateful for friends such as these.

Ward & Cynthia the day we took Jim’s Ashes to Sea

I met Cynthia and Ward through Scottish Country Dancing. I have known Ward since I moved to San Diego in 1985. He is a teacher for the San Diego Branch of the Royal Scottish Country Dance Society. I have known both of them for many, many years. Cynthia and I have become good friends since Jim, my husband, died from cancer seven years ago. I have enjoyed getting to know her. I have been grateful over the years for their ongoing support. She is a very talented crocheter and stitcher. I have renewed my crocheting skills with her encouragement and teaching. It is a fun and ongoing relationship.

I will remain here for another week so I can recover at a snail’s pace if need be. I am aiming to recover a bit faster than that but my body will decide that point not me.

Tomorrow I can go back out into the world. I have to attempt it because I need to take care of my rig and get more propane. Life continues. on.

What is next? On February 28th I get a full-body scan to set a baseline. I am a bit nervous about this. I can do this, though. Nerves are just a part of the whole game plan. I get nervous every year when I get my mammogram. Cancer has a way of doing this to a person.

My ultimate goal is to get through this moment in time and move forward with my life. I know I will be in the San Diego area for a while. I need to make sure I am on the right dose of Synthroid (a synthetic thyroid hormone). It takes time to build in the body. My next labs will be in five weeks. If it is OK then I am good to go. If not, they change the dose and I wait another five weeks to get my labs drawn again. I may not have to wait here but if I do, it is not too much of a hardship to be in San Diego and surrounding areas.

I can do so much more with all your support. Today I am grateful to see another sunset. Today I am grateful for all those who love and support me. Today I am grateful.

Getting Ready to Glow

This past Friday I returned to San Diego. I am getting ready for the next part of the treatment for thyroid cancer. I needed to be in the city early for lab work.

Happily, at the moment I am parked south of town, on the bay. I love the convenience of the Bike the Bay Trail from here. It is a flat and often windy ride. I had plans to bike the whole thing but then I remember the horrible disrepair of the streets around Imperial Avenue and decided to bike the better section down and back. It is a great trail, mostly off-road and takes one around the south end of San Diego Bay and up The Strand to Coronado. It is a flat and windy ride and very pretty. On The Strand, the bay is on one side and the Pacific Ocean is on the other. As you arrive in Coronado there is a beautiful view of the Hotel Del Coronado, one of the grande dame of hotels built in the 1800s. This time I biked it without too much of a headwind, it made for a nice ride.

Tomorrow I leave here and move into my friends’ driveway for several days. On Wednesday I will drive to Kaiser, alone, take the pill and semi-isolate myself for approximately a week. My little home on wheels will become my sanctuary for this time.

sag wagon summer

Who knew my Roadtrek would ever be needed for this purpose. EmmyLou has been a sag wagon for a summer, driven friends to spend Easter with the family, and an art studio, and more. Now it is going to shelter me, continue to keep me from harm, and safe until this is over. She is definitely a wonder mobile.

I am a bit nervous and overwhelmed about this whole thing. I am putting this nuclear medicine into my body. It is a scary thing.

On the day I began a low iodine diet, I started reading a book titled Radium Girls. It is about the introduction of radium onto the world stage. Very shortly things started to go south for the women who worked in the watch factories where they painted radium onto the hands of the watches. I woke the morning of the diet and stopping my meds in sheer panic. I couldn’t do this. I mean, these women were dying from radium poisoning.

Thankfully I was staying across from Jim and Rhonda. I walked over there still panicking. They calmed me down, suggested that I return the book to the library (which I did) and then we talked it through. Jim reminds me a lot of my husband Jim. He was calm and insightful and asked the right questions. The final question he asked was “What would Jim say to me?” I looked at him and I said he would be compassionate and understanding and then say move ahead, get it done so we can move on with our lives. After all, there are adventures out there that are waiting.

It took a few more days for me to make a final decision to move forward. Once that was made, then I could enjoy my time in the desert with friends and sleep better at night.

Here are a few things I know. I choose not to die from cancer. After all the years working as a nurse, loving Jim through his disease, cancer is not kind. If I can, I want to remain cancer-free for the rest of my life. I know ultimately we don’t always have a choice yet there are some ways we can encourage that route not to occur.

Head and neck cancers come back. They are known for this. Not everyone experiences a second round but many do. Jim did. I choose to do everything within my knowledge to help prevent that from happening.

Once the radioactive pill is taken I know there are certain things I can do to help my body survive radiation treatment and I will diligently do all that is required, drink a lot of water, suck on hard sour lemon candies and stay on the low iodine diet for a few more days. I will be a very important part of the team that is assembled to help me through this. These people do not only include all the medical people, they also include my friends and family.

I am getting ready to glow and move forward. It is too bad I can’t become a superhero for a week and use this opportunity to fight for what is good and right. Oh wait a minute, I can do that without radioactive iodine.

My current mantra is:  “Get Through February”. Many of you ask what is next and although I know you are curious, it causes a bit of anxiety in me. Why? Because I don’t know. I need to get through the end of the month and the first few weeks in March and then, hopefully my world will open up a bit and I can explore what may be next. Currently, I need to get through February.

The desert helped me to feel strong physically, mentally and spiritually. I am in the best shape I have been in, for quite some time. For now, I want to take this forward and focus on today. Tomorrow can wait.

Getting ready to Glow.

 

 

 

 

Another Next Step

Two days ago I returned to San Diego from the desert, dragging my feet all the way. It was finally time for my appointment with the Radiologist to discuss the next step regarding the treatment for thyroid cancer. I have been very good to this point of compartmentalizing the whole issue. Now it is time to bring it back into focus again and deal with it.

I have received questions from some of my friends wondering when the next step would happen. This morning, along with my good friend, Cynthia, I was off to my Nuclear Medicine appointment. The Doctor was a very nice man and extremely patient as we reviewed the preparation for this upcoming procedure. The preparation appears to take more effort than the treatment with the radioactive iodine.

This morning the doctor and I discussed how I will live for the week of being radioactive. It looks like I will be able to stay in my rig. I will need to be mindful of being too close to people and avoid children and pregnant women. There are certain things that are part of RV living. One of them is managing my gray and black water (waste). After speaking with the Doctor this morning I am feeling a bit more comfortable regarding that management issue. It is not always easy not having a permanent home.

I am scheduled for treatment on February 19. Two weeks prior I start on a low iodine diet, stop my medication to begin to prepare my body to receive the RAI. I want to starve any thyroid tissue remaining in my body so it is eager to receive the RAI. The week after ingesting the RAI I will be radioactive. Unfortunately, I will not gain superpowers or become a Marvel Comics character. Shoot, wouldn’t that be cool?

It all sounds so logical and easy. I am dealing with emotions. At this appointment this morning, I discovered more emotions than I expected. I found I was weepy and a bit scared. I am worried. I have had cancer for a second time. I don’t care if it is a very treatable cancer, I still have had it. After Jim had head and neck cancer, I swore that it was the one type of cancer I never wanted (not that I want any other kind), and here I am with head and neck cancer. This appointment was in the hospital where Jim was treated and spent the last two weeks of his life. I did not present my best self this morning. Thank goodness for tissues.

After my appointment, I went for a bike ride, a long bike ride. Exercise helps gets my emotions back into some semblance of control and order. And now I am writing this. I am at the moment emotionally exhausted. I am working my way towards acceptance. Acceptance of treatment, Acceptance of needing to rely on friends since my family members live far away, Acceptance that I will need to be in and out of San Diego until the end of February. Staying put too long, makes me think I am missing something somewhere else. 😀 Always the intrepid traveler.

During my three days here I have successfully sold a desk and file cabinet from my storage locker. It was a bit of an adventure getting both pieces into the buyer’s SUV. With great persistence, we were able to get both pieces in, and off they went. Bernadette and Tom are a very nice couple and I feel like two more “Jim and Janet” items went off to a good home. Next, the kayaks. This will be another tale for another post.

Tomorrow I will return to the desert. I am looking forward to it. I am driving into a meetup with good friends that I see yearly, in the desert and sometimes other places as well. Sandy and Pat are such a delightful couple and I look forward to meeting them again. I am ready to hike. I am ready to relax and get on with a normal life for a little while. The one thing I do not want to do is wait. I want to get on with life until the middle of February. Winter is desert season and I am off to enjoy it, in all its glory.

Getting ready and getting moving.

 

 

 

 

 

Impatiently Recovering

Walking the Beach-Helps in Healing

It has been a week since I had the other half of my thyroid removed. I am recovering well. I tend to overdo it a bit, then I have to rest up for a day and try again. Sitting still or lounging around has never been me. I like to hike. I like to bike. I like to walk on the beaches. I like to be busy.

Today I went over to my storage unit, yes I do have one of those, and by the time I got there, I did not feel so well. I sat inside my storage unit and pondered why I felt so awful. Oh right, I had major surgery a week ago. Oh right, I have not been drinking enough liquids. Catching a ride with Lyft, I found my way back to the RV park I am staying in and have been lounging the afternoon away and drinking lots of fluids.

The really, really, really good news is that I am cancer-free. The biopsy came in at the end of the week with no trace of cancer. Yes!!! I immediately felt a bit lighter on all levels of my being. The decisions are not done as I have to decide whether I will do the radioactive iodine treatment. I will see both doctors over the next few weeks and will listen to their advice, yet this is a decision I will need to make for myself.

One of the phrases that has been a part of my life since I was diagnosed with breast cancer is “Get all the input you can, make your decisions and then don’t look back”. With that in mind, I am researching radioactive iodine.

Elsie and I moved back into our home on wheels on Tuesday. I am hidden at the back of the campground at Santee Lakes. Although the water is a distance away, I am enjoying the low visitor impact in the back. Each night I hear the coyotes, so you know that Miss Elsie is in before dark.

I am feeling very grateful for my friends, Cynthia, and Ward (who took care of me) and Nancy (who took care of El). Because of their caring and support, I believe that everything went much smoother. My recovery would be flawless if I had remained at my friend’s home. I may not have found myself pushing too far too quickly. That is a lesson that I continue to need to learn.

My friends have been calling and reaching out. I am glad to be remembered. It reminds me, that even at my lowest moments, I am loved and supported by many. I am remaining grateful and thankful for such good friends.

I am so thankful for a No Cancer Moment.

 

Breathe

This time of the year is always a bit difficult for me. I arrive back in San Diego to get all my medical and dental completed for the upcoming year.

Dr appointments loom or have already been finished. My annual mammogram is complete. Although it has been almost ten years since my diagnosis of breast cancer, this time of the year I notice I become slightly anxious as I await the results of the mammography. I have about ten days to go before the results are in.

This year, 2019, is a bit more difficult. I have surgery on Friday to remove the other half of my thyroid. I have cancer. I have papillary thyroid cancer. My left thyroid will be removed to prepare me for the radioactive iodine treatment that will seek out any thyroid tissue that is left anywhere in my body.

Today I had my pre-op appointment with my surgeon. Dr. Ressa has followed me through breast cancer treatment and now the thyroid. These visits are never easy for me. I have a lot of questions. Being a nurse makes it harder because I read a lot. Being a one-time cancer survivor increases the number of questions and concerns as well. Having had almost six months to anticipate this coming Friday has allowed me to evaluate and add more questions in my mind.

Here is what has not helped me while waiting to have this surgery.

  • I have heard the good stories and the bad. It does not help me to hear that this is a “good” kind of cancer to have. There is no “good” cancer!
  • It is good to hear positive outcome stories, it truly is, however, I would encourage those who say this not to devalue my situation. At present I am anxious and a bit worried.
  • Surgery is surgery and not to be taken lightly. I am not taking it lightly and I would like others to not brush it off either.
  • Don’t question if I caused this cancer. Don’t tell me that if I had done something different I wouldn’t have cancer. It seems that only people who have not been challenged with this diagnosis say these things.

The bottom line? I have cancer. That statement alone is overwhelming and a bit lonely. How is it lonely? I have found since Jim died, I have no one to talk to daily about things that make me happy or things that concern or frighten or discourage me. I miss having that daily person to check in with and support me no matter what. Even when I might have done something stupid or said something out of character, Jim was there to give me a hug or counsel me through indecision and worry and often lead me in the right direction to correct wrongs.

It is hard for me to do this for myself. I can, it is just harder. In my current lifestyle, I find I have to push myself to interact with others. Often the campgrounds are full of air-conditioned RVs. When these hot Santa Ana days are upon us, very few people come outside or interact with their neighbors. I don’t blame them. It is “hot” in San Diego county these days.

Joining cancer support groups sounds like a good idea. I have joined a few thyroid support groups on Facebook. They are filled with nice, mostly women. Here is the deal with these sites. The women who post are having issues pre or post-surgery. I now avoid them as surgery looms nearer, they scare the heck out of me. I find I am overwhelmed on these sites. I feel sorry and sad for these people who are going through difficulties and I worry about me and my outcome. I have taken a hiatus from these groups until I am post-op.

When things like this arise, I miss my family. I have two sisters and two nieces that live over two thousand miles away. Their lives are busy. When things like this come into my life, even if I recognize it is complicated, I would love to have them show up on my doorstep and take over for a week or two. As a rational adult, I recognize this is not possible, yet the little girl in me still wishes that one of them would show up anyway.

This is where friends have stepped forward to help me out over the next few weeks.

 

Miss Elsie the Cat

  • My friend, Nancy, is taking Miss Elsie the Cat into her home and life. She loves kitties and Elsie has always really liked her. It is a good fit.
  • Cynthia and Ward are taking me into their home for the weekend post-surgery. When I think of this offer it brings tears of gratitude and caring to my eyes and heart. I am so thankful for their caring and support. With their support and encouragement, I will be on the road to recovery and dancing quickly. (They are members of the Scottish Dance community in San Diego).
  • Phyllis is my go-to friend. She will help in any way that I will let her. After traveling for two months in Africa we still remain good friends. That is an accomplishment in itself.
  • All my friends near and far will be loving and supporting me. I feel so fortunate to be loved by so many.

Now I need to take a deep breath, push worries aside, walk into Friday with positive thoughts for the best of outcomes. I need a mantra for this. So far the only one I have come up with is “breath”. The other mantra I have had for years is “You are a good and caring person and worthy of being loved”. I often say this to myself as I look in the mirror morning and night. Now I say Breath.

Asking for thoughts and prayers is a statement that has been degraded over time. There have been too many situations over recent years that have made me hesitate to ask people for this. Instead, I will ask you to send a breath my way on Friday filled with whatever you want to fill it with. It will help me walk into a current unknown future. I have no doubt that I will feel the love and support.

Moving forward, one step at a time.