This morning Rich rolled over and asked me what it felt like to be a half a century old now (granted he has known for a few years now!) and the first thing I could say was, “Lucky.” But I really meant blessed. I was so sick on my birthday last year, I wasn’t sure I was going to make it to my 50th birthday. Yet, I was surrounded by family yesterday as I rang in my 50th lap around the sun! This time I had hair…I could breathe, and there weren’t tears about cancer and what could happen. I just had a good time.

Tim flew in on Saturday afternoon and it was fun to watch the UFC fights by his side for the first time in quite awhile. It is so much more fun watching fights with him as he is a UFC walking encyclopedia . We have watched the fights together for over a decade so I have missed it so much with him away! Joe, Michelle, and their dogs, Moose & Jenna, drove up on Sunday afternoon. I got to spoil my family with Valentine’s Day gifts and spend the day playing board games and working on some of my photography class assignments. It was great having some people willing to let me practice with them! I will post some photos later of those. I literally unplugged while everyone was here so had to spend a lot of today catching up on work, thanking friends, etc. I had not been getting much sleep at night because of the steroids I was on. I could fall asleep, but if anything woke me up, I was unable to go back to sleep. I was already in my icky phase of my chemo round and the lack of sleep wasn’t helping. However, we all crashed Sunday night and slept hard…all 6 of us…and even the dogs didn’t make a peep. Of course if I had to go outside and it was -26 degrees F, I wouldn’t be too anxious to do that either! With a solid 8 hours of sleep under my belt, I started my 50th birthday well rested. It was wonderful. We had another day full of board games and more photo challenges. This one was to make frozen bubbles. Joe was awesome as he stood out in the -30 windchill with me trying to blow bubbles. The night before he was helping me try to capture light painting with flashlights. These are all things that I am still working on and are hard enough to capture with a cell phone versus an DSLR camera in manual mode, as was the assignment. We ordered dinner from Texas Roadhouse and after that and cake was eaten, it was time for everyone to head home. I am so very blessed to have such a fabulous family who was willing to travel to Nebraska during two record-breaking cold days to spend the day in the house with me. I had a great time playing games (although Rich keeps pointing out that I was the only person who didn’t win a game this weekend – I blame it on chemo brain).

I want to thank everyone for the wonderful wishes. I was overcome by all the birthday wishes….which started the night before my birthday from my friends in Kuala Lumpur and then the Philippines and Japan. I have beautiful flowers from Kathy Martz, Kathy Truddell, Jane West, Adrienne Howard, Fiona Macklon, and some from Rich as well! I remember when we lived in East Grand Forks, Minnesota (that is WAAAAAY up north for those of you who don’t know) and I was turning 30. Rich had a bunch of flowers and the boys were really little. He was standing outside in the cold…kinda like it is here now…and came into my chorus rehearsal to surprise me. I was a Sweet Adeline at the time…singing women’s barbershop music. He came into the warm building and all the flowers promptly wilted and died because they had flash frozen in the extreme cold. These Nebraska florists had it going on! They had everything double wrapped at a minimum and my house looks amazing with all the cheery colors! Thank you so much! Michelle Krueger made me sunflower cupcakes that weren’t only delicious, but totally adorable as well! Definitely a hit! Other stalwart friends braved the cold and dropped off gifts….Erika Campbell and Susan Ferguson! Can I tell you how hard it is to not just grab you and give you each a big, fierce hug? You all better start getting ready for it…because it’s gonna happen one of these days and I might just squeeze you pretty hard. I miss it so much. Susan brought some board games over with a little plastic trophy for the winner to have when they won the game. Oh, why hadn’t I thought of that? My kids are in their 20’s and were fighting over the trophy. Ridiculous! I had packages from friends and family to open….I can’t thank you all enough for thinking of me! I truly was overwhelmed…and the cards! My sons were amazed at the stack of cards! To say that I felt loved was really an understatement. Thank you everyone.

I was able to talk to very briefly with my parents on my birthday. They live in Houston and were without power and cell service for over 24 hours. It got down to 52 degrees in their house! My brother lives 10 minutes away from them and he didn’t have power or water but had cell service, as he had a different carrier. I finally got to catch up with them this morning after their electricity was restored and they were thawing out in their own home. I had been worried about them all Monday as I had no way of contacting them. Sounds like all is well with them now, but Craig, my brother, managed to have a pipe burst in his house, so he will still be roughing it without water for a few more days. What a crazy weather system hitting our country! They implemented rolling blackouts here to help conserve energy for the other 14 states that are in our power grid. When the windchill is -40 and they decide to cut your power off for an hour at a time, it made me a bit nervous. Lily didn’t have school due to the cold today but we had power restored and spent our day bundled up with the heat turned down as the power company asked of us. We’ll all be complaining of it being too hot before we know it.

So what’s the next goal? Sheesh….we actually planned to go on an Alaskan cruise in July. Booked it and everything. However, there is now a snafu with Canada not allowing cruise ships in their ports until February of 2022. Since we were sailing out of Vancouver, that is an issue. They have 6 months to figure it out…but in case that doesn’t happen, I am thinking my next goal will just be our 30th anniversary. It’s a big year for me! I turned 50 and I have my 30th wedding anniversary in August. By then I will have been on at least one more different treatment regimens, if not two, so I am curious to see how things will be going in 6 months with my health. Until then, I will just keep plugging along and hope the weather warms enough to resume some walks with Tallinn again. We are both missing it!

Nope…it isn’t x-rated. Not my style. This is a post of gratitude. I already mentioned in my earlier post that things really turned around at the cancer center today and I felt the compassion. I always feel it from my infusion nurses, whom I love. They are a HUGE reason why I have stayed under less than ideal circumstances with my oncologist. Every time I have chemo, I shoot a photo of myself getting my chemo and with the ASL sign of “I love you”. I mean that to those that see it. Each time I post these photos on Facebook, I get a flood of responses. It is 12 hours past the time I posted that picture on Facebook and I have nearly 150 reactions and dozens of loving posts cheering me on. It overwhelms me every time. Thank you. You love and support and prayers and good wishes mean the world to me.

I also mentioned in former posts that my goal #2 was to make it to my 50th birthday. That is Monday….and it will be a bitterly cold day in Nebraska that day…most likely breaking records on Valentines Day and President’s Day, both. I keep joking that Hell will freeze over when I turn 50 and it appears it is going to try its best. Ha! My bigger kids are all coming home to spend Valentines Day and my birthday with me. They all came last year to celebrate. I was totally bald at that point and very very sick from the chemo combination I was on. It was literally killing me. I couldn’t carry on a long conversation with my family or blow out the 3 candles on my cake. I was super winded walking into the restaurant for my birthday dinner, even though I had been dropped off at the door and was holding on to Tim’s arm for support. It was awful…but it was the turning point in my care and I am now so much better. My cancer may not be a lot better but my quality of life sure is. Hard to believe that was the last time I went out to a restaurant to eat until the weekend of Joe and Michelle’s wedding in mid October. Haven’t been in a restaurant since. Pesky pandemic.

I have started getting cards in the mail…and I have to be honest. I am not opening most of them. I am saving them for my birthday. I surely won’t be going for a walk outside that day, so I will need something to do! Thank you so much for the packages and cards. I am already overwhelmed by the outpouring of love. Truly, saying thank you just doesn’t seem enough….but it is all I have right now, so I thank you. I normally don’t like to be spoiled or the center of attention, but I am going to allow it on Monday, as it is Goal #2. A special thank you for the flowers from the Banchors I got last week…they are gorgeous and just keep going! I also got a beautiful bouquet from Fiona today….I LOVED what the card said : “This arrangement is called ‘Floral Crush’ – appropriate because you have just CRUSHED 12 cycles of chemo!! You are totally awesome!” I received this about 30 minutes after I got home after spending the morning at the cancer center. It was totally heartfelt from one cancer patient to another….it meant the world to me! Thank you! Actually Todd Banchor is also a cancer survivor….both he and Fiona know the blow-by-blow of the chemo treatments, the side effects, the roller coaster ride of physical, mental, and spiritual ups and downs. They have been by my side in a special way because they know intimately what I am going through as they have done it as well. They ask me the tough questions I don’t always want to answer but feel better later for talking out. I am going to put Hollie Hogie, Maria in London, Liz, and Kathy Trudell in this group as well. Yep…some of my cancer support group folks I have never met because they don’t near me. Some live in other countries….yet we are there for one another.

Today I got a very special blessing. I told you about my experience with the VA. When I was told I didn’t qualify to my face at an empty vaccination clinic, discharge papers in hand, and 20 workers smiling at me ready to poke my arm, I was crushed. I mean for a couple of days. That day was bad though. I was furious. Then I was heartbroken. I literally sobbed the whole way home in the car as Rich drove us. Well, he left me alone once at home to cry it out. I didn’t realize how much it hurt him as well. They say ‘Men are from Mars and Women are from Venus’….women like to be able to talk things out and be heard. Men like to get things done. Over the past few weeks, Rich has been stopping by every pharmacy he drove by…..making phone calls to higher ups, putting me on a waiting list after waiting list across the county. (fun fact – not only is every state different in how they disperse the vaccine, but so it every county within Nebraska. Makes life fun.) Anyhow, Rich was talking to one of our baseball customers today who has a wife we both used to go to boot camp with. She is one of THOSE people…in crazy great shape…lifts more than the boys…runs to class for an extra workout and has 4 kids. Yep, the person you love to hate. She also happens to be a pharmacist. Rich asked her husband if she would be getting vaccines at her pharmacy location. He told Rich she now worked for his best friend in a suburb of Omaha and he would reach out to him to see if he had any available. This customer’s best friend, when hearing about me, called Rich and we were in his place 40 minutes later, filling out paperwork for me to get vaccinated. So, ladies and gentlemen, I received my 1st vaccine for COVID 19 earlier this evening. I received the Pfizer vaccine. So in three weeks, I get to go back and get another vaccine. By mid March, I will not only be on another cancer treatment regimen, but I will be vaccinated and have the 2 weeks for it to take effect. Praise God, maybe I can carefully go back to Church in a mask, a lesser attended Mass time, and keeping my distance. That would mean the world to me. Rich received a call as we were about 10 minutes out from the location I was vaccinated at and it was a pharmacist friend of his from an Omaha metro business group he attends. These men meet every week via zoom and/or in person. They all know what I am going through and they often call or email Rich to see how I am doing…especially if he has missing a few meetings, as he is quite a regular attendee. His pharmacist friend called and said he was willing to come to my house to vaccinate me tomorrow night. We were able to thank him profusely and tell him we wouldn’t need him to do that. I have to admit I was thinking of a cancer friend…the only one I know who hasn’t gotten his vaccine yet. I felt guilt about him. I also felt guilt about all the teachers who are waiting for their vaccine. One of the workers came up to us as we were leaving and said that her boss had told them (the staff) about me and my situation and they were adamant they get me in ASAP. I turned to her and told her that I had been pretty much in my house since Nov 2019. No family in the area, no one when the pandemic hit a year ago. I told her it was just me and my dog. I was in tears…and so was she as I told her how I was having such a hard time knowing my time was significantly shortened by cancer and having to spend it alone. I hate getting emotional in front of others. If she would have hugged me, I would have started bawling I think…but alas, this hugger is suffering during the pandemic. (actually, my good friends, Todd and Deb, have come in masks with a clean blanket and wrapped it around me and hugged me briefly. It is the most wonderful thing!)

This morning I literally cried out to God on the drive to the hospital for treatment. I was running a little later than I wanted. I went to leave and thought I should put the laundry hamper in the hall where I would see it immediately when I got home so I would remember to do the laundry straight away. Then I noticed Tallinn didn’t have enough water in his bowl….and so it goes. This is my life…always seeing things to do. At any rate, I have the inane ability to hit every red light. It is a family joke (that Rich doesn’t think is so funny). I don’t even have to be driving….just in the car. So, true to form, I was hitting every red light on Center St. After the fourth one, I literally shouted out loud in my car, “God! Why are you doing this to me? Why does everything have to come so hard for me right now? Why can’t I just get a break?!” Lo and behold, the next two lights were green. I thanked God out loud. Things went swimmingly at the cancer center….I left 90 minutes earlier than I ever have. It was the warmest day of the week….I took the dog for a short walk. And the miracle of the vaccine happened. God was listening and I lift up this day to Him.

It has been a long haul. One full year of Doxil. I have been through cracked hands and feet….large blisters all over my feet and some between my fingers on my hands….a constant burning of my feet when I am still…horrible rashes that have left my skin completely raw in different places on my body. I have had bouts of nausea for about 5 days starting about day 3 after my chemo. One more of those bouts to go….starting this weekend. My hand vacillate from being all wrinkly like someone 30 years my senior to being red and swollen where I don’t really even have fingerprints. (Such is evidenced by these new-fangled phones that would like to use my thumb print to unlock. It can’t read mine…and when it does, it only will match maybe 1 out of 10 times). First world problems! Anyhow…this was most likely my last Doxil infusion. It is toxic to my heart eventually and I am getting close to the lifetime dosage. I have been on some form of chemo therapy since early December 2019 and my specialist has recommended I take a break and perhaps try something not so toxic for a little while and see how it works. That is if my scans I scheduled for March 8th come back decent. I will teleconference with my specialist at Mayo at that time and we’ll solidify the plan. If the scans come back less than desirable…we make other plans. Either way, a month from now I will be doing something different. Contrary to the side effects I listed above, this has been a relatively easy chemo regimen for me and I know that I may have to really embrace the term, “suck it up, Buttercup” from now on. Every time I go to have a treatment, I don’t just put “chemo” in my day planner (yes, I still like to have something on paper as well as on a virtual calendar!). I always put, “Take treatment with grace.” I think about it on the way to the appointment and with all the people I deal with during my treatment: nurses, doctors, other patients, and other ancillary staff. That is my goal. If I need to fall apart, I do it when I get home. Today, it was reciprocated. The head social worker met me and gave me a gift. I had been inadvertently left out of the first two cancer support groups I signed up for online. It was totally an oversight, but she felt really bad and even brought me a gift from the cancer treatment boutique in the hospital as I didn’t even think it was open…I have never been there. I got the opportunity to see the nurse practitioner instead of my medical oncologist and she was a wealth of information. What a breath of fresh air! One of the infusion nurses stopped by while I was getting my chemo and gave me her card and a brochure about nurse navigators. All info I should have gotten 16 months ago. But my battle will hopefully wage on for a long time, so I am happy to have this information. I was overwhelmed with their kindness. Even the second nurse (when they give you chemo – poison, really – they have to have two nurses check all the information on the bag of chemo…my name and birthdate – and the long ID number on my hospital bracelet vs the number on the infusion bag. The secondary nurse wished me a happy birthday since it is only 5 days away and I wouldn’t be back before then. For the first time in a really long time, I left feeling that I wasn’t just a person with cancer, but Cyndi: a person with a name.

Nope, not about the vaccine…you’ll hear me shouting from the rooftops on that one….from whatever state or country you live in! No, I may have a break through in my care….again…not talking cure…there is no cure for leiomyosarcoma or magic pill. However, I have had an uphill battle with my local oncologist, who has been not very fun to deal with. I have been patient….I have been his patient since November 2019. For a person who tends to get along with just about anyone, this man has rubbed me the wrong way from the beginning….not listening to my complaints, not giving me any information on meds and side effects, not checking on other aspects of my life…as how I am doing mentally….just not giving me support in any way. It has been hard to deal with as a former nurse, because I know what good care should look like. During my last visit to the oncologist’s office and my infusion in January, I finally got the courage to sign up for two different zoom meetings through the hospital for cancer patients. I really was feeling that alone that I felt I was ready to participate in these two groups. I sent emails to the social workers who were in charge of each group on their respective fliers. I heard NOTHING back from either one. The class dates came and went with radio silence. I finally mentioned it to Rich this weekend and he was beyond livid. He was ready to move my entire care to another healthcare system within Omaha today. I told him I loved the infusion nurses and I loved the hospital itself. I finally knew my way around to where I needed to be for tests and treatments. I love that they play a lullaby over the loudspeaker in the whole hospital when a baby is born. I love that they have prayers over the intercom system in the mornings. I love that the nurses in the oncology, radiology and infusion centers see me and ask how I am by name. I just have had a few bumps in the road. Rich looked up their patient advocacy line and called them over the weekend. He left a message and my name and number. The director of oncology/infusion centers called me this morning and I told her everything that was going on. She asked if I had talked to my nurse navigator. I told her I have never had one. That I had never spoken to social worker…that my local oncologist doesn’t listen to me and his nurse is too soft-spoken to be my patient advocate. I told her I was not only concerned about my lack of care but of those older patients without a medical background whom are being seen there. She agreed. Someone actually listened to me! I am no longer seeing my local oncologist. I will only see his nurse practitioner (who is new to his practice). Since my sarcoma specialist is calling the shots from the Mayo Clinic, it shouldn’t be an issue to have her be my primary person I see here. My appointment was changed for Wednesday to have her as my primary person to see prior to chemo. I also got a phone call from the social worker at the cancer center. She is sending me more information about groups meeting via zoom and said she would come and talk to me when I was getting my chemo at some point. So yay! I am hoping that I will have a lot more success at least at being informed from now on. This is important to me as I will be changing my treatment starting next month, and I want to be informed about my choices and the effects of those choices. FINALLY!

I started collecting quotes a few years ago. With Facebook and other forms of social media that can have some jewels of wisdom brought forth amongst the craziness of the world, I wanted to write down some of the sayings that meant something to me. I purchased a journal and started writing them down. Some are scripture from the Bible, others quotes from some unknown person, some from people I have heard of. Here are two from the last 24 hours that have made my book:

Exodus 14:14 The LORD will fight for you, and you have only to be still.

“If there ever comes a day when we can’t be together keep me in your heart. I’ll stay there forever.” from Piglet talking to Pooh. A quote from A. A. Milne

With a pandemic that continues to rage on, there have been a lot of things put on the back burner. Support with those with cancer is one of them. While the world focuses on COVID-19, there are hundreds of thousands of cancer patients that are fighting a very personal and life-altering battle for their lives…alone. Loved ones can’t go into treatment with them for support. Doctor appointments are via zoom. Operations that would have been done straight away are being postponed. Those that are having surgery are again, facing it all alone. Cancer just doesn’t stop and take a time out because there is a pandemic. Life goes on and cancer rages on. I know there are lots of other diseases that fall right in this category…of people who need a lot of support and are finding themselves isolated for the last year. Imagine going through a battle with cancer…doing chemo and/or radiation….surgeries…all alone without the love and support of friends, family, church members who have always been by your side but are now not allowed to be for your own safety. I have been stuck at home alone since Nov of 2019. I am waiting for a vaccine that will cautiously give me some of my life back. So on this World Cancer Day…I wait….still. Most of my cancer friends abroad around this country and in others were made a priority and have been vaccinated. I am still waiting. Hopefully by March? We shall see.

A friend of mine who is a LMS thriver posted on Facebook this morning that she lives because she loves. We then all posted our reasons for continuing to fight this disease…the loves of our lives, our family. So this is why I continue to fight…for my loves, who are pictured below.

As I type that, I am singing it in my head to the tune of “Islands in the Stream”…. Ha! Oh my goodness does Tallinn love the snow! When I finally decided I needed to borrow Lily’s help to throw the snow whilst I took the photographs rather than trying to do all of that at once….Tallinn refused to come in. (and I will let you know that it is not warm outside!) His absolute joy for the snow is contagious. He was doing all sorts of matrix dog moves to try and catch the snowballs we were throwing in the air.

One last photo….I had so many people comment on this photo that I am going to share it here. Lily noticed a cardinal sitting on the top of one of our evergreen trees in our backyard in the heavy snow yesterday. I managed to snap one photo before he flew away to find shelter.

We had a bit of a snow event yesterday here in Omaha. We had 12 inches of snow fall. It is the most snow (non-storm) in a one day total since 1975. It just kept snowing yesterday! Lily was off of school yesterday and is off again today. People are trying to dig out. I knew it was going to snow big, so I made a huge pot of sauce and some meatballs. I end up freezing a lot of it to have for later. I went to put the meatballs in the freezer and realized my freezer wasn’t working…and the condition of some of my frozen (or not frozen in this case) items, made me realize it hadn’t been working for a couple of days. Bugger! I order my meat from a company so I had lots of food in there. Luckily, we have a refrigerator in the apartment in the basement. I went down and plugged it in and got all the contents of my refrigerator moved downstairs. It is pretty inconvenient, but better than sitting in the snow on my back porch. Lily was helpful in cleaning out the freezer and refrigerator and now we are just waiting for a repairman. It will be a few days. Our house came with a projector, which we use rather than a TV. That light bulb went out a few days ago and won’t be replaced for a couple of weeks. My house has decided it is done with all of us being home so much. I think it is tired and wants us all to go back to school, work, etc…and let it rest!

This morning Rich was outside starting to snowblow at 0700. I joined him at 0730 to help do the shoveling. We finished our house and moved on to our neighbors. I shoveled 3 walks and Rich cleared about a half a dozen driveways. It really was a peaceful morning to be out. We got to watch the sun rise and I tried to capture some of the beauty of it with my phone. I can tell you that it did not do the actual scene justice, but still wanted to share with you. I will be taking Tallinn out later and I am sure there will be something fun to see with him. He loves the snow.

A friend of mine reached out to me today. She is a retired Master Chief and lives in the area. She told me she had gone to the VA and gotten her vaccine today and that I should go! I just had to verify that I was a veteran and I could get my vaccine! Rich and I went right down. There were probably 20 people working….maybe one person getting their vaccine. It looked like a well-oiled machine and I was hopeful. Because I did not have a an appointment, I was sent to a desk to talk to a young lady to see if I could get an appointment. I handed her my DD214….my discharge paperwork. She went on her computer and told me I could not get a vaccine at the VA because I am not poor enough. My husband, a vet, makes too much money. My service as a kid to a military dad, my service as a nurse in the Air Force, my decades of service as a military spouse, and now as a military mom…none of that matters. I served 3 years as active duty military and because I never filed for any disability from the military, I don’t qualify. If you all know me at all, you know what a patriot I am and how much I support our military in anyway I can. Today, that military, whom I have supported my ENTIRE life, disappointed me and told me I did not matter. It was a really hard pill to swallow. Every time I allow myself to get excited about something it is taken away. Today was a real slap in the face. I miss people. I am a people person. I miss hugs. I miss hugging my kids…seeing my kids. I have been home since Nov 1, 2019. I am so tired of it. So, so tired of it. I am willing to let others who are more important to others get vaccinated first. But people are getting vaccinated that are secretaries….researchers that work with mice….most of my cancer online friends have been able to be vaccinated in their states and countries. To be turned down, as a veteran, when the VA has all these vaccines sitting there and no one in line for them….well, that was such a huge kick to the gut. I felt as if I being told my service didn’t count and I was not important enough to warrant giving a vaccine to. I do not want services from the VA…only the vaccine, since they have an abundance of it. Disappointment does not even begin to touch how I feel…and not that I didn’t get the vaccine…that stinks too…..but that I was told I wasn’t poor enough to count as a veteran. Let that sink in. Dying of cancer is better than not having money evidently. Sigh. Welcome to the VA system.