I know it has been awhile since I have posted. I have been doing really well so far on the aromatase inhibitors. No nasty side effects other than joint and muscle pain, and that is manageable. Yay! Now let us pray that it is actually working! My hands and feet are still a mess, but I am hoping as time goes by, they will continue to heal and feel better as I no longer have chemotherapy agents being added to my system.
I have spent the week doing photography stuff and also doing a lot of work as we are leaving on a road trip later today. South Dakota, Montana, and Wyoming, here we come! Just a lot to do in advance at work, especially during tax season!
I got a huge surprise a couple of days ago. I got a phone call from Julia (Palma) Law! We lived in Norway at the same time and her son played basketball with Joe. She has been overseas this whole time and we have stayed in touch via Facebook, but it was so wonderful to hear that southern twang on the other end of the phone. Julia and I went to high school at the same time in rival high schools in Louisiana. Small world! Anyhow, we were able to chat for about an hour and get caught up with each others’ lives. Hopefully we can actually meet up as she is now stateside and also in the Midwest. I am also continuing to get cards from Lois and Jim Doyle…neighbors from my Northern Virginia high school days. I can’t express how much their support has meant to me. MeiLing sends me these awesome postcards made from photos she takes from walks near her home in San Diego. They are so beautiful and almost make me feel if I am there on a walk with her! Speaking of which, I need to do that…go for a walk before we get in the car later today. I am sure Tallinn will appreciate it as well! I hope to be able to post along the way…but if not, I will have photos for when I return!
Why, do you ask? Well let me count the ways! First off, it is the Feast of St. Joseph…on a Friday…and not only are we celebrating this great saint today, but Pope Francis has us celebrating him all year long! We Catholics have the option of eating meat today because of the celebration. Just an added bonus.
I started my advanced photography class this week and today I was able to go to Platte River State Park to take waterfall photos. I went at 0800, so it was chilly (24 degrees F) which was good because the mud from all the rain this week was frozen. There was plenty of water in the waterfall…and I was all by myself. I also sat by a Lake (really a pond in my opinion) that was as still as glass. I sat down on the concrete boat launch by the lake and just enjoyed the view and took several photos. A couple of geese swam by and then came right near me and exited the water and preened their feathers near me for awhile. They were about 15 feet from me. One of them was not happy when I stood up to get up and leave. Envision an angry goose hissing with an extended neck and getting ready to flap his wings at me. At least it wasn’t a swan. They are super mean and aggressive…and really big. Anyhow, that was somewhat entertaining when it stopped being terrifying. So I got some good photos and part of my assignment for lesson one done.
This afternoon I got a bone dexa scan at Bergan Mercy. They took x-rays of both of my hips and my lower spine for a baseline reading for bone density. That will be repeated every two years if I am staying on the aromatase inhibitors, as it is one of the three most common side effects. The other two are joint & muscle pain and then hot flashes. There is other side effects….a list as long as my arm, but they aren’t as common. Afterward, I was able to get my Lupron shot! Nora (my oncology nurse who usually gives me my chemo infusions) got to give me a shot in my right hip instead. A lot faster! So tonight I will take my first AI pill. I am not going to be on letrozole afterall…but anastrozole. There are three different versions of AI’s and that is one of them. Anyhow, we hope to travel a little bit, so I am hoping that just being on pills will be a little more freeing. I will still have those shots tying me to the hospital once a month, but hopefully it won’t be too bad. I should know in the next few days to weeks how my body will handle this new treatment. I am really looking forward to my hands and feet healing! So it has been a good day all around thus far! The sun is shining and it got up to 54 degrees F today. Tallinn and I laid down down on our back porch in the sun today, which we both basked in. So Happy Feast of St. Joseph! Have a glorious weekend everyone!
So I do have a wee bit o’the Irish in me…besides the fact that I gave birth to a leprechaun! (see photo of second son for proof!) But it is not all four leaf clovers, green beer, and corned beef & cabbage….St. Patrick was a real person and did a lot of good in his life spreading the Word to the people of Ireland. He was kidnapped and worked as a slave there for 6 years during his youth as a shepherd. He made it back home to England, became a priest and then chose to go back to Ireland, where he had been enslaved, to teach the Irish about Christ. He is famed to have used the shamrock as an example of the trinity with its three heart-shaped leaves on one plant.
“Christ beside me, Christ before me, Christ behind me, Christ within me, Christ beneath me, Christ above me.” -St. Patrick
This is the time of year that the boys and I used to travel to Las Vegas for the international 7’s rugby tournament. We went 6 years in a row…with the last two years being cancelled due to COVID. I love rugby. Not only is it a prime sport, but the fans are like no other. You are pretty much expected to not only don your team’s jersey, but also dress up during the events. This is a photo of Tim and I a few years ago, which was appropriate for today!
Also…for those of you wondering about my treatment plan….we are going with my Mayo doctor’s plan (duh)…and I am now waiting for the hospital here to get their act together. I had hoped it would have been started last Friday but may be next week before they can get everything set in place. It has been one mistake after another on their part and I finally had to get Rich to talk to them today as they just seem to ignore me. Evidently I should be getting two phone calls on status updates today. Not holding my breath, but cautiously hopeful.
Friday morning I had a zoom meeting with my local oncologist. It was supposed to be a quick meeting of the minds so I could get started on my new treatment. Since my new treatment is not a chemotherapy agent, it literally would take just a writing of a prescription. I figured this would be easy. I should have known better. We started out our first ever zoom meeting with my local doctor with him taking a phone call less than 2 minutes into our conversation. He hadn’t read the message I sent him or the progress notes my Mayo doctor had sent him. In our 10 minute zoom meeting, he took two phone calls and left his office….leaving us to chat with his resident, who really was in no position to be able to help us with what needed to be done. When he finally gave us his attention, he looked up aromatase inhibitors in cancer treatment and found a study about a combination of drugs my specialist and I had not talked about and that was recommended for endometrial cancer (which I have never had). He thought we should try that instead. He told me he would email my doctor at the Mayo clinic and they would discuss it and get back to me. The British term “gobsmacked” is the most appropriate word to describe how I felt. I had a plan with my specialist 16 hours prior and now this man was throwing a monkey wrench in things. The longer I thought about it, the more mad I got. I emailed my specialist and told him what had happened and I didn’t feel comfortable taking any drug cocktail until he and I spoke about it first. I want to mention that my dr at the Mayo Clinic is the head of sarcoma specialists. He is the big wig. He did a zoom meeting with Rich and me for 25 minutes and never once answered his phone to interrupt our appointment. Sigh. When I sent my message to the Mayo doc, I noticed his RN is on vacation until March 23rd…which made my heart plummet. Dr’s have their nurses go through all their email first….so I figured I was never going to get this resolved. However, Friday evening, I received a message from my Mayo doctor saying that our original plan should be carried out and not what my local doctor suggested because it was inappropriate for my situation. I forwarded that to my local doctor and hope to hear from his nurse on Monday saying that I have a script pending. Why does this have to be so hard? I could be mistaken on this, but this is how I FEEL: I feel that my local doctor looks at me and sees a disease…not a person. He doesn’t care about my quality of life or my questions and concerns. Is it because I am a woman? Perhaps. He always asks Rich about his business…yet never asks me how I am feeling. Is it because I ask questions? A lot of them? Is it because I educate myself so I can ask intelligent questions about my treatment options? I am going to once again ask that I don’t have appointments with him any longer but only with his nurse practitioner. My heart goes out to his elderly patients who just sit and accept everything he throws at them without question. Why don’t I change doctors? Well, this guy is in charge of everyone, so everyone has to go through him. I was assigned to him because I have such a rare cancer. I love the rest of the staff and the hospital, which is why I don’t want to change hospital systems at this point. So I am praying. Praying for this doctor that I am so upset with. Praying for his other patients. Praying that I get a call on Monday clarifying what is going on with me so I can move forward without too much wasted time. We want to travel a bit at the end of the month and I want to know what my side effects are going to be like prior to just taking off on a cross country road trip.
Special thanks to my good friend, Fiona, who sent me a delicious chocolate birthday cake! Due to the deep freeze here in Nebraska and there in Texas, it was postponed until this week. So I am still partying and enjoying my cake! Thank you Fiona!
I also want to mention that I was able to zoom with my Nazareth group last night! What’s a Nazareth group? We are a group of 12 people who get together (pre COVID) for a potluck dinner at our host’s home…then we have structured fellowship and do Lectio Divina ( a type of meditation) on the next Sunday’s Gospel reading. It had been A LONG time since I had been able to get together with these people that I consider family. It was so wonderful to see their faces and be able to talk about our families….pray for each other….it was like going home for Christmas after being away for your freshman year of college. I am really looking forward to being able to meet in person again…maybe this summer!
I had my teleconference with my sarcoma specialist from the Mayo Clinic late this afternoon. He said it was remarkable as to how my body was reacting to the chemo and that I was tolerating the treatment better than most people. My lungs looked better and my spine was stable. He felt that my abdominal tumors remained relatively unchanged. He felt it was time for me to have a break….a holiday…from chemo agents. I am now going to be placed on aromatase inhibitors. That is fancy speak for meds that shut off all my estrogen and progesterone in my body. I had my tumors tested and they were highly estrogen and progesterone positive. By taking the AI’s, it should starve my tumors. For many people, this treatment has worked really well for a long time….as in years. Others, it hasn’t worked at all and the tumors have grown. I won’t know until I try it. I will get the double whammy and also have to get a shot each month to make sure that I am definitely in menopause. Blood tests have said that I am, but with one ovary left and unable to be removed, they don’t want to take the chance. But the other medication, the aromatase inhibitor, will be a pill that I will take daily. No meds go without their own side effects though. There are three main side effects (in this order): osteoporosis, joint pain, and hot flashes. Now I take this with a grain of salt as when I started Doxil, this doctor told me that I might get red hands and feet. Wow. That was an understatement. However, I am guessing he figures why go into the details of the bad things that could happen as a result of these drugs if there is a chance I won’t even have them. So we’ll see. I will continue to take calcium and vitamin D daily and also take the IV medication Zometa every 3 months, as I have been. I will talk with my local oncologist tomorrow morning to start things rolling. So I am cautiously optimistic. The next three months are chemo free for the first time since I was diagnosed in Nov of 2019.
The oncology nurse practitioner called me this morning with my CT results taken on Monday. Kind of a mix bag. According to the radiologist here locally, the mets to my lungs and spine are stable and have shown no growth. This is good. However, and there is, unfortunately, a “however” here, the large tumors in my pelvis that are inoperable, have grown. But (and now I am using a “but” here too), it is really minimal growth. We are talking millimeters growth on tumors measured in centimeters. The NP had no idea which way my specialist at the Mayo Clinic will lean. I mean with him via zoom late tomorrow afternoon to hear his take on the CT scans and to work with him to devise a plan going forward. My bloodwork has been good over the last year on Doxil, so I am healthy enough to start another chemo straight away. I just really would love to give my hands and feet a break. So….the news is somewhat reassuring. They did not note any NEW growths, which is really good. In 24 hours I will have a plan and the next morning I will have a zoom appointment with my local oncologist to put that plan into action. Thank you so much for everyone who has reached out saying they are praying for me. I had messages from all over the world and each and every one of them touched me. Although I am physically alone when I go into those scans…and the treatments, I can feel a blanket of love around me from all of you. Thank you.
I had CT scans of my chest, abdomen and pelvis today…with and without contrast. I remembered to tell the technician that I had just had my second COVID-19 vaccine. Your lymph nodes can swell when you have that second shot. I could actually feel it in my right armpit, the side I had my shot on. I know my body is working on getting prepared to fight COVID, so it isn’t a bad thing. Now if the radiologist didn’t know that, he or she might think I might need a biopsy on my swollen lymph nodes. Yep – no thanks. So I remembered to tell them. So the scans are done. I will get a call on Wednesday from the local oncology team to let me know what they found on the scans. Then on Thursday afternoon I will have a zoom meeting with my sarcoma specialist from the Mayo Clinic in Rochester. He will talk to me about what HIS radiologist saw and what he interprets the scans to say. Then we’ll make a plan…for at least the next 3 months. If there is growth or new mets pop up, then we’ll talk about starting a new chemo regimen. If there is stability or shrinkage, I hope to take a chemo break and be put on AI’s….aromatase inhibitors. They are not chemotherapy but have their own lovely set of side effects. This is my best case scenario and I hope that I will have good news on Wednesday and Thursday. Friday morning I will have a zoom meeting with my local oncology team to discuss the timeline of the next step decided by my sarcoma specialist and me. It’s a big week. Everything seems to hinge on this week…travel plans being the biggy. This week my parish is having their parish mission. It is kind of like a Southern Baptist Revival Catholic-style. It lasts about 2 hours for 4 continuous nights. It has tremendously helped me deal with a week that I could totally have let spin out of control. and it has only been 2 nights so far. Instead, I am going to just live my life in joy (it has been in the 70’s!) and let what comes, come. I have learned that I am equipped to deal with everything that has been thrown at me so far. I have an army of prayer warriors surrounding me!
Well, the 2nd Pfizer vaccine got me. I figured it might as I am on chemo and my WBC count is on the lower side of normal. About 12 hours after my vaccine, I started running a fever and had body aches and just felt icky. I slept most of yesterday and still managed to go to bed before 9 p.m. and sleep through the night. I am happy to say that today I am feeling back to my old self. So if any of you are having a reaction to your second shot…it only lasts about 24 hours. Now on to scans and doctors appointments next week!
I have really been disappointed in the way Nebraska has dealt with vaccinating people with pre-existing conditions such as cancer. We were told to go to a special website and get registered and we would be called soon for appointments. Then this group was dropped from the vaccination list altogether for a couple of weeks. Now they plan on vaccinating them dead last before the general population….and only in the order of the medical staff’s (and which medical staff is unclear) determination of severity. Luckily, as I mentioned before, I got in for a Pfizer vaccine 3 weeks ago. I received my second vaccine about 2 hours ago. I am blessed. I am also happy that it was announced that 5000 teachers in our county will get vaccinated with the Johnson & Johnson vaccine this Saturday. My parents live the suburbs of Houston and they have found it very difficult to get vaccinated…and their age group has come and gone. Today, they both got their first vaccine shot of Moderna. Praise God! I know that masks and physical distancing still has to take place, but wow, would I love to be able to go back to church! Tonight, as I am looking at a spectacular pink sunset after a sunny day of 65 degrees….I am feeling blessed.
Yesterday, March 1st, was Nebraska State Day….her birthday…154 years old. We lost one of our own yesterday whom had gained national recognition over the last 8 years or so. Most of you non-Nebraskans have no idea where I am going with this. However, those of you who are, are nodding, knowing the great loss we incurred yesterday. In 2011, a 5 year old Nebraska boy was diagnosed with a malignant brain tumor. His name was Jack Hoffman. Given a bleak outlook, his parents, Andy and Bri never gave up trying to fight for a future for their young son. They eventually went to Boston for surgery. Before they left, Andy reached out to Rex Burkhead, who was playing on the Huskers football team at the time. Rex ended up meeting up with them right before they left for Boston and befriended the family, using little Jack as a rallying point on the field and on the sidelines. A year and a half later, Jack was invited to participate in the Red and White Spring game….the Husker scrimmage that has typically 90,000 plus people in attendance. Rex Burkhead had moved on to the NFL at that point (and now plays for the New England Patriots), but Jack donned the #22 jersey which Rex made famous and stepped onto the field. Taylor Martinez, the quarterback at the time, handed the ball to young Jack and the team blocked for him as he ran 69 yards for a touchdown. Both benches were cleared as all the athletes came out onto the field to lift Jack onto their shoulders and carry him around the field. It was an epic moment in Nebraska sports history and that clip brought a lot of recognition to the foundation that Jack’s dad, Andy, co-founded called Team Jack. They were looking to raise money for pediatric brain cancer. Jack and Andy were awarded an ESPY ( like a golden globe for sports folks) and they were invited to the White House to meet then President, Barak Obama. Andy was able to help raise over 8 million dollars in the last decade for Team Jack. Jack, who is now 15, plays football in a small Nebraska town, and is a linebacker, like his dad, Andy was. Jack is in a clinical trial that has kept his brain cancer in remission and he is leading a normal life. His dad, Andy, however, was diagnosed with brain cancer (not the same kind as Jack…but a more rare and aggressive kind) about 7 months ago. Nebraska rallied around him, selling Twice the Fight shirts to raise money for Team Jack. He was being seen at the Mayo Clinic in Rochester, but was positive for COVID-19 in February and stopped his chemo to come home and recover from his illness. Although he recovered from COVID, the brain cancer was too aggressive for him to battle. He died at home yesterday, on Nebraska State Day. He was 42. There small national news articles about Andy that are going around today. For those of us in Nebraska whom have watched this man give everything he has for the children of the world suffering from brain cancer, the word was out within hours of his death. My heartfelt prayers go out to his family, and all who knew him….and that is a lot of people. One more person I hope to meet in Heaven….