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.

Sorry about last night. I had just reached a breaking point…and crumbled. But as I said, I don’t want to sugar coat things because life with cancer can’t be. It is a roller coaster ride. Yesterday I was still pretty much dealing with my ‘roid rage, which I deal with for a couple of days after chemo before I start feeling icky for a week. So no worries…I will be trading my bad mood swings that I try so hard to contain for nausea soon and will be back to my old self. I was also (thanks to the steroids) going on 4 hours of sleep. I was able to just collapse into bed last night…albeit very very late (or early) but thanks to a blizzard here in Omaha, I didn’t have to get up and get Lily going for school, so we all slept in, which was wonderful and needed. I did get an email from the state of Nebraska’s veterans department this morning. I may not qualify for VA benefits, but I qualify to have “veteran” stamped on my driver’s license and to have Air Force Veterans license plates. Sigh. There is that, I suppose. Rich will be getting his 1st vaccine in a couple of hours. I am happy for him. It will, in reflex, also keep me healthier. Since he is in retail and out and about in the store each day and in the public running errands for the store, he is less likely to bring it back home to me, which I have worried about.

Now on to lesser issues….like how to do my photography class project photos regarding hard and soft natural like in the middle of a blizzard. First world problems that will most likely have to wait until tomorrow when the wind and snow abate and the sun peeks out again. Off to get some work and home stuff done. Lily is off of school today. She missed 3 days of school for our trip to Colorado and now has a four day weekend to catch up. I told her it was a blessing from God for that (she is not good at playing catch up, unfortunately, or working independently from home). I am sure some of you heard her teenage sigh and eye roll from where you live. Have a blessed day everyone, and stay warm!

So many of you have commented on my great faith and my optimistic attitude, etc. Well, ladies and gents…I am going to vent and have a pity party for a hot minute, so here’s the flip side of a majority of my postings. I am human after all. Granted, my brain is saturated in steroids and I am usually really over emotional after my chemo treatment…so there is that to take into effect as well.

I did not mention that yesterday when I was seeing my doctor, I asked him about getting the COVID vaccine and when and where I could get it. It sounds like I have to make an appointment through my county health department. Evidently those people that are immunocompromised are somewhat shoved to the back of the line…the last ones to get their shots before the healthy public. So all the elder people across Nebraska will get their shots first prior to someone who is like me, who is young, but immunocompromised. Do I want to shove in line in front of someone’s grandma? Of course not! I would just like to be added to the same group. My group is set to start being vaccinated sometime in March…with the second shot being in April…then the two weeks after that to be completely set in the vaccine. That brings me to the end of April. That is 4 months from now. I had cancer surgery Nov 1st…major abdominal surgery that I had to recovery at home with. I started chemo straight away. I was very sick last winter as I had a rare reaction to the Gem/Tax I was on and the neulasta shots I was being overdosed on. It was really miserable. I went to the cancer center every week for treatments and to church on Sundays. That was it. Once they finally listened to me and I was taken off the Gem/Tax and put on massive doses of steroids for a month to help cure my lungs of the damage done, I started feeling a lot better. This was in March….when everything shut down. So, folks, I have been home since Nov 1st, 2019. I am sick and tired of it. It will be a year and a half of my life wasting away at home when I was given 1-4 years of life left. Granted, I am going to try and beat that, but those are the odds….and I am wasting away at my house. It really really sucks. But back to yesterday. Evidently my local oncologist is also the head of oncology at the VA Center here in Omaha. He said they have lots of vaccines and are giving them out to nearly everyone who wants them that is a vet. He said, “Too bad you all are vets.” We looked at him and told him we both were. Rich has been with the VA for awhile now since he was in the service for so long and because he has health issues due to his service and so he is tied to the VA. He is a card-carrying member. I had never applied because I didn’t really need to. I was told it would take less than 24 hours to find out if I qualified. Well, I was turned down because Rich is my husband and he makes too much money for them to deem me worthy of being a VA member. Rich is getting his first shot tomorrow. I have to wait 4 months. This really crushed me tonight. I am absolutely gutted about it and have been unable to stop the tears over the last hour or so. I am busting my behind to do everything I can to fight this cancer and I could walk out my door and be infected by some stranger or someone I know and die from COVID. I am just so mad about the whole thing. I am mad, I am upset, I am devastated. I am really mad at myself for letting me get my hopes up. I tried not too….but I couldn’t help it. Granted, I am lucky. I haven’t contracted COVID. I am careful. But I am so very isolated. Lily goes to school….Rich goes to work. I go to the next room to work all day. I have no idea what will happen in March when I have to change treatments. New chemo won’t be as good to me as Doxil has been. Most of them are more harsh. The aromatase inhibitors (which I am hoping to try as it is a non-chemotherapeutic) has the side effect of painful joints and muscles all the time. Sounds like a great choice, right? So then I have to face the fact that I may feel awful or be in pain from here on out. I feel like I have missed my small window of opportunity feeling good trying to save my life from this virus. My priest told me that maybe I should just chance it and live my life. But I look at my newly 16 year old daughter and can’t make that choice with a good conscience. Right now, I can’t stop crying and my heart hurts. And then the flip side of me feels guilty because I have friends who have died from COVID…and friends who have lost parents and loved ones….and here I am whining about my own life. To those folks, by sincere apologies. I will get over this. When I started this blog I wanted to be real and show the good, the bad, and the ugly side of it all. More of a memoir for my kids and husband, none of which even read this blog. So, here’s the selfish and pity-party me in all its glory. Now to go pull up my big-girl panties and get on with living and shove these feelings out the window into the blizzard that is heading our way….so they can blow far away and let my heart have some peace after expelling all the pain.