This week, I had a scheduled follow-up with Dr. Tafur, a check in. One of the nurses called to see if I could come to the Hobbs clinic to get labs drawn on Tuesday to be super ready for the appointment.
I'm so glad Dana could bring me.
I look atrociously sick.
I actually was atrociously sick..........my blood numbers and other lab results proved it.
I ended up in the ER Wednesday.
Maybe this is a main reason why I keep dipping down, falling back on my improvements, dealing with incontinence......
I thought about going to get more fluids and many even a blood transfusion. When I called to suggest it, I was told to head there now.
I got an ER room. Next, had to endure 8ish practice IV sticks until one finally worked? It ached the whole time I was there. They took blood and blood and discovered that I had a bacterial infection. They got me set up for a stay in the hospital. I was out. of.it.
I heard talk of e.coli.
And growing e.coli.
Good thing I got some blood and fluids.
I apparently looked like a zombie.
Had my port accessed. Got some meds. Hooked me up to all the BP, and heart and everything monitors.
I fell asleep off and on all night, as they came in off and on all night to check my vitals and/or help me use the restroom. I had to get out and go to a walk around the halls with occupational therapy.
I was running a bit of a fever, and my BP was low, I so I guess they were justified in having me hospitalized.
Stephen was able to call in reinforcements, Auntie Deb and Dana.
I was still sleeping a lot and felt tied to machines, but incrementaly better each day. I FINALLY was able to shower....no shaving. I'm so glad Auntie Deb was able to stay with me and that Dana was able to take over Evan's b-day pizza party that had already been planned at school.
Dr. Tafur came by.
Dr. Patel was sending word that I might be released on Friday (Evan's birthday!)
I could come home and have Stephen give me the antibiotics.
I will take it easy and try to see if I can get back on and stay of the right track.
Packing up and getting outta here! I went to take a shower and the toilet went on a cyclone rampage. We tried everything we could, but I guess she just wanted some attention. This was yet another reason to escape.
Hopefully, I will be able to get better and be more myself.
Directly after the bell-ringing, we were taken to a waiting room to see Dr. Sun.
It was a bit awkward, as I had not spoken with him since the debacle that was my trip to Lubbock and having all the things be canceled. The communication was obviously WAY off, and I tried to be a little bit kind, but also tough to let him know how frustrating and wrong all of that was.
He was apologetic, but still didn't have answers.
We discussed many things.
I was scheduled for chemo infusion that day, and he was being quite weird about that. I was ready to go. He left the room for awhile.
There's just not a lot of information on if it's a good idea or would cause me more problems.
I wanted to get that done before our trip because I did not want to push it back again. Again, he left the room. I'm sure he was calling fellows and researching.
He returned.
There were a few negative reports on people not exactly like me, whether a slightly different diagnosis or different chemo.
I finally convinced him to just let this happen, and he reluctantly did.
Finally, it was time to go home and rest! Had to surprise all the boys at home,
though!!!
Finally! After so much push back and waiting and canceling and fatigue and all the things, we have done it!!! I had a power boost today and put on a happy face and got the last brain radiation done!!!!
Many of my peeps were there to help celebrate as I rang the bell!
And, then I had to throw in some of my humor with Eedolem.
I'm so glad to have made it to and through this checkpoint!!
After what felt like a wild goose chase to find Dr. Sun's office, we finally made it to Dr. Sun's office. (Three different people giving us directions that did not match with each other or with the address I have been given. It was more than a little bit frustrating.)
Even though we showed up late for my scheduled appointment, everyone was very nice and accommodating once we arrived.
Dr. Sun, with his calming, quiet voice, was welcoming and kind. He checked in with my current treatments, and seemed very happy about Enhertu. Then, he started asking questions.
Have you been having headaches?
What about other pain?
Nausea? Diarrhea?
Fatigue?
Other new symptoms?
This line of questioning was getting a little bit annoying, so I finally said, "Dr. Sun--Is there something wrong with my scans? Just tell me what they found."
They found some new, REAL, tumors this time. It's not the best news, but not the worst. They are planning on doing gamma knife radiation in the next week or so. Sun will get with Scranton and make a plan for me to come back to Lubbock and get the new spots zapped.
He asked if I wanted a video to show the new areas of concern. The first part of the video shows the scans from the top of my brain down. The top part is not of concern.
The last half of the video shows new spots in my lower brain. Most of them are circular or pointed out by Dr. Sun.
I am not super happy about this news, but I am ready to keep on keeping on.
I felt well for the majority of the three weeks between rounds.
All was well except for early Saturday morning, when I woke up at 4:00am and vomited. I couldn't fall back asleep, so I sat in the bath and threw up again. Another hour in the bath and I started to feel better, but my brain was exhausted. I experienced a little episode that I've had similarly before. where my brain knows what it wants to say but can't make the words come out. I was also very tired from too much house work, not enough sleep, and had a terrible headache. Thankfully, after some rest and some drugs, I recovered that afternoon! I need that to remind me not to go overboard and work beyond my capabilities.
The other little touchy thing in the last three weeks is coming to the knowledge that my hair wasn't going to make it. I would rather go bald than shed.
I didn't make a big deal out of this event; just a few friends and family stopped by to give support.
I love that Evan wanted to help with taking off the hair!
It's nice that I still have a good head for baldness and support to get me through.
A few years ago, I spoke with the daughter of a fellow breast cancer support group member about her company's project for breast cancer survivors. It was unlike anything I had ever come across during this battle. This company,Mei/Co Dance, a dance company, uses their art to bring peace and hope to breast cancer patients and survivors.
A few years ago, Meggie, the daughter of my friend and the owner of the company, called to record my story and put it together with music and choreography. Unfortunately, I was unable to attend the performance, due to my health and our moving away from Houston, Texas. However, Meggie later called to share that several audience members had commented on the strength and powerful messages and feelings they experienced during that dance. One woman, in particular, was so moved because she felt a great connection to her own life, as she had recently been diagnosed with breast cancer. Meggie also sent videos of the dancers practicing for the performance and expressing positive messages and prayers to me for being such an inspiration. That all warmed my heart and made me even more dissapointed that I was unable be there on the actual night.
A few months ago, I was contacted by Meggie, out of the blue. She let me know about the company's move to the DFW area, amazingly the area in which I now live! Meggie also informed me that they were working with a few other local dance companies on a fall performance. "Can we use your story?" and "Will you be able to attend?," she asked. Knowing that this performance would be held in my backyard made it so much easier to envision FINALLY being able to see the tribute en vivo.
Before this night, I had only had virtual contact with any other members of the company. I had never met any of them in person, but had only seen some pictures and videos and heard their voices. I managed to convince Stephen to accompany me, knowing that Meggie was saving two seats for us.
We arrived to the address of the event. Originally, I imagined a venue at some performing arts center, but arrived to a stunning home with an enormous backyard. (Luckily I checked on the style of dress beforehand!). An impressive stage had been constructed, along with all the fancy lighting and sound equipment. I met a fellow member of Meggie's company first, and then met Meggie's family. Finally, we were set up and ready for the performance to begin.
The heads of all the companies took turns introducing their performances as well as their overall missions. I hadn't before realized how driven they all were by the power and peace and hope and faith in God. I was touched by spirit of the Lord that I felt from the start. I was humbled when Meggie introduced me and explained how honored she was to have me there. She even summarized my story and how it related to the dance called "Pink Sunsets."
My dance was the second to last one on the program. Right before it began, Meggie and another member of the company moved my chair to the front and center of the stage, so I wouldn't miss a moment. I felt like a celebrity. How grateful I am for this company and their work.
I was moved by my dance. I saw the theatrical part of my story through their movement and use of the props. This dance was choreographed, based on my story about telling my children to remember the pink sunsets, especially when I'm gone. I've reminded them that I would be looking down and watching over them, and the pink sunsets would help them remember. The dance focused a bit on me learning to dance in the rain during the fight, after a second diagnosis, but Meggie really wanted to focus on my boys and how they know my love through things I've left behind and the signs of my love along the way.
As if my emotions had not been impacted enough by the performance, afterwards, Meggie handed me flowers and a card from the entire company. Then, each member introduced themself and spoke about what an honor it was to create this dance, and I could not stop the happy tears. Meggie asked if they could pray over me, and that led to even more happy tears. It was lovely.
Finally, it was time to go. As we were saying our goodbyes and heading to the car, we passed a group of dancers from another company as they worked to pack up the stage. One guy stopped me and added his thoughts and feelings about my dance and how inspired and touched he felt and spoke about wanting to jump into our circle of prayer in order to be lifted up in the spirit and light of what seemed to be around us all. To that, another member of his company chimed in and agreed.
It was all so different than any other show Stephen and I have attended in the past. And that was perfectly fine for today. I needed this comfort and spiritual/emotional uplift, and I am so grateful to have been a part of this memorable evening.
After a few days of my hair coming out in clumps, and then the follicles and scalp in constant pain, (like leaving a bun/braid/ponytail in too long and then brushing it out the opposite way), it was time to shave this head-----AGAIN!
A last minute invite was sent out for any local support who might want too be witnesses to the change, and the new 'do started at 8:45.
A friend of a friend (Lynn) was available at such short notice, which I was grateful for!
I was so grateful for local warriors also available for this impromptu party.
Off it came.....complete with a background story:
Gone now!
I'm thankful, so I've been told, that I have a good head for baldness. This has come in handy for FOUR TIMES NOW!!!!
I've been thinking a lot about scars, the evidence of experience.
Scars can be a reminder of something traumatic, the proof of injury or pain. They corroborate stories of heroism, accidents, survival, or something miraculous, like bringing new life into this world. Then, there are those hidden or unseen scars, those buried in an emotional place, and perhaps not as easy to share. Over the years, I've collected all kinds of scars, some visible to all, some hidden behind the pain of heartbreak or tears.
My personal war on cancer has left me with a long list of evidence of the experience. Between the hair loss/hair regrowth, steroid weight changes, the physical illness and weakness, the disabling (at times) pain, the radiation tattoos, the port scars, needle entry holes, the fake belly button, the fake nipples, and the huge abdominal scar along the point of harvesting tissue for the fake breasts, I have plenty of proof of multiple battles. All the physical scars probably have emotional ones to go with them. Being on the front line of battle for this many years has been stormy and frightening, but hasn't been all bad.
Some of my breast cancer battle wounds are proof of what I have learned and overcome. I decided early on in the process that I was going to stand strong and "not shrink" from this fight. There have been times when my strength was taken and the pain seemed nearly unbearable, but those were the moments when I truly learned to put hope and faith in God. I have come out on the other side, free from pain or having the ability to bear what's put on my shoulders, often beating the odds and seeing miracles. I have learned to value all levels of difficulties, from the smallest frustrations to the largest fights, knowing that sometimes, getting out of bed might be the evidence of winning the day.
Over the years, it has been incredible to see glimpses of proof of how my example has helped others to survive their own battles-cancer or otherwise. I constantly strive to find the positive, whether in a simple smile or 'howdy' or the joy of an ombre purple wig named Katy (and all her friend-wigs). I have come to see that I have scars, but they are not to bring me down. I can choose to hate looking at my fake belly button or ugly belly scar and hate my body for not being able to fight off cancer, or I can be reminded of all I've survived and that I've come through this journey for a reason, maybe many reasons. I have learned and continue to learn through this trial. I think everyone has scars through unique journeys, so we all can inspire and share the testimony of overcoming.
I am often asked how I'm able to smile and feel joy or why I don't look sick, having "Stage IV Cancer." It's a choice. I could stay in bed and stop fighting and just wait to die, but I don't do that. I choose to fight as long as I am able. I'm hoping to leave evidence of my journey, perhaps even something to further research that might benefit cancer patients in the future. I'm hoping to leave evidence for my children, proving that they, too, can do hard things. I hope they will be able to look at their own scars and realize that they have survived great things. I hope they never give up hope and faith, even when more scars are bound to happen. Even though there will be more battle wounds and more storms to face, I am hoping that they know that they are never alone. They can look at my scars and realize that they have no reason to make excuses to shrink from their storms. They can think about being a survivor, even when the story seems to have a less than perfect ending. And, if my scars don't give that hope and evidence, I'm hoping they will see that my faith has been in Christ, who has helped me to have the strength to do all the things I've done, the One whose scars in His hands and feet give the most evidence of hope and faith and overcoming all.
Today, I got results from my scans. My CT came out great. There was no change or evidence of growth. My MRI of my brain was less than great. The two lesions that we've been watching, (I'm going to think of them as battle scars). have grown. They were less than 1mm in size and are now 2-3mm, about the size of a grain of rice. I'm going to see Dr. Wardak again. Dr. Cole hopes that he will be able to do some targeted radiation, just on those scars, and be able to clear that right up. I am feeling fine about this new development. I have an incurable disease. New battles will pop up. I will keep fighting them until I can't, and even then I know I will have survived the journey because I never gave up and never let fear overtake my hope and faith. I am a survivor.
I have the scars to prove it.
After my infusion, I decided to try to spread a little happiness to other patients by giving out some "Seeds of Happiness," my aunt had collected.
My crazy friend took a video of it. Here's a little clip:
