The end of all the Chemo

 Here we are! I made it to the end of the worst of the chemo. My symptoms have not really improved in most areas, but the fact that the end was near kept me hanging on. Basically everything upset my stomach and made me sick, but somehow I was able to eat enough and not lose a bunch of weight. I am glad for that, I don't need my body to have more to recover from. Since my last post I have been struggling with my eyes a lot more.

Taxotere has caused my eyes to water constantly. I tried my best to keep them clean and to be gentle on them, but they swelled up all along the lash line and just got worse. I had to go in for antibiotics twice now. I have blepharitis from the tears being there and touching irritating things. The doctors seem to think that the odds are that my eyes will dry up and get back to normal soon. The truth is that my odds have not been the best with most of the side effects, etc. I don't exactly think that my chances are great, but I am going to remain hopeful.

With treatment for the blepharitis I have seen that the tearing at least doesn't hurt now which is nice. I can open and close my eyes without the swelling causing pain which is also nice. It also made it a lot easier to use my eyes. They were so swollen before that I could not read or see. I walked from my bed or chair to the bathroom or table slowly and squinting the best I could but glasses were of no help because I couldn't see past the swelling and constant tears.

I made it through though! The worst of the chemotherapy is done! They said I will be put on "baby chemo" later but I have made it through this leg. In about 6 weeks I will go in for my surgery to remove my port and to remove the tumor and affected lymph nodes. It is good to see that I am on the other side. The sun feels like it is shining a bit brighter and my smile feels closer to the surface.

Kids have started school again and so far they are enjoying things the best they can. Things are super busy and I am so thankful for Husband who helps keep things managed still since I am not feeling myself yet. I really hope to be feeling a lot better SOON! This feeling sick and sitting around a lot has been so annoying for me. I am a get up and get things done person so sitting has been really hard on me mentally.

When I came home from my final chemo there were flowers and balloons and a giant sign on my garage from FRIENDS. I felt so loved and seen. While I know that they would have loved to give hugs and cheers in person, it was exactly right that I saw it and then went straight inside, laid down and fell asleep. 

I lost my hair but they gave me soup

 Things are continuing as they were, bloody noses, tummy troubles, sore mouth and throat, weepy eyes, and super tired. BUT, there have been tender mercies along the way. The bloody noses are mostly manageable and I am able to get the bleeding to stop pretty easily. The sore mouth was a problem, but "magic mouth wash" prescribed by Doctor has helped - amazing what lidocaine can do for a person. When the compounding pharmacist talked to me about it they were quite thorough in my instructions for use, storage, etc. I was honestly semi skeptical about it, but it really did help to be able to try and numb some of the pain and discomfort.

Thanks to the plentiful soreness in my mouth, brushing my teeth - especially with a minty toothpaste felt like a horrible prospect. I will admit to even tears some times when it was time to brush, but I was able to find a tube of children's toothpaste that didn't burn my tongue and made brushing feel like less of a chore. I have been tired, but I have a family who are willing to step in and do things to help take care of one another so that I can rest.

My hair has started to fall out again in earnest. Seeing the hairs that have started to fall out again has been fascinating. When a hair falls out you can see a visual representation of where my body has been over the last few months. At the furthest point from my head the hair is fine and wispy like a baby's hair. By the middle of the length the hair is darker, denser, and healthy looking. Then as you continue down the hair there are pieces where the hair tried to grow but wasn't able to and looks more and more broken and fragile until it finally broke off from my head. I know that our bodies often show what we have been going through with messages that we don't always mean to convey, but it was interesting to see it play out so visually in my hair follicles. 

Last week I was really craving soup. It is the middle of July and I want a bowl of soup - makes perfect sense because when you can't eat very well without choking a bit and can't make enough saliva to make food moist enough to swallow, soup is a great idea. I just wanted something to eat that wasn't so much of a chore. I ate some canned soups because it seemed silly to make a giant pot of something. But I was getting sick of the idea of yet another can. I said a prayer asking what I could eat that would help me. I wanted to find out what I needed without having to put a ton of effort into making something. 

I finished my prayer and immediately I got a notification that Friend had texted me. She wanted to know if it was ok for her to randomly bring me some soup. I kid you not when I say that I started crying. Friend brought me soup and once again I felt so loved and cared for. I ate the soup like a starving person, it was so good! It was one I would not have thought to make for myself but was exactly what my body was needing.

When I ate my way through that soup and was feeling a bit iffy about what I was going to do next, I had another Friend come by. Friend brought bread and more soup of a different variety. Again, exactly at the time when I needed it. 

While feeling like garbage has been hard, God has blessed me. His people come and rescue us constantly and we feel buoyed up despite the hard things happening right now. I may lose all of my hair once again - actually I am planning to shave it all off again because it's annoying to me to have it constantly falling out and into my eyes. But even without hair,  I still know that I am a beloved daughter of God.

The Icy Queen Bee

 When I do the Taxotere treatments, all along I have been using ice to try and keep the neuropathy to a minimum in my hands and feet. I feel it nonetheless when we are done, but it doesn't last so that has been good.

The way it works is we take a bucket and fill it with a bag of ice, put my feet or hands on top and place another bag of ice over the top. It isn't comfy, it isn't fun, but it works and I would rather do that for an hour than not be able to feel anything for days. 

About ten minutes in I really start to hurt in my joints from the cold, by 15 minutes I am starting to go numb and can't really worry too much most of the time. And by the end of the hour I am watching the timer and waiting impatiently like a kid on Christmas for the go signal to rip open the wrapping on my presents. When my hands and feet come out like frozen blocks of ice, I remind myself that it's summer here so they will defrost soon enough. 

Summer has been hot and dry here, and that has done a number on Husband trying to keep my many plants alive in and out of the house. Add in that we have a huge influx of bunnies and we have been unable to keep some of my plants alive without miracles. Neighbors are seeing dead grass in their yards, plants disappear over night because the bunnies have so few things left that are lush enough to really eat, so they're coming right up to the front door. They have eaten avocado trees, vegetable plants, and just about every flower my neighbor or I have put in the yard. Some of mine they have stayed away from so I'm hopeful that something will survive the bunnies.

As the reigning Queen Bee here in our home, I have tried to keep things going and Husband has tried to help make things as normal for the Kids as we can this summer. We canned strawberry and blackberry jam. Husband took the kids swimming every day. We dried tomatoes because I still have plenty of canned variety from last year. We stayed up late, woke up early, played games, they went to parties and watched pets for friends. Doctors appointments for me, doctors, dentists and orthodontists for the Kids - it felt like they just kept coming even after we rescheduled several things. Coordinating all of that has been a herculean effort on the part of many. I couldn't do it without my amazing supports. 

Friends, neighbors, Husband, Kids, Church family - they have all played a part in making our hive thrive. Soon we will start school and Kids will be gone for hours at a time all at once, part of me looks forward to it. Part of me wonders if the quiet will prove too much after the first two days - the other part of me looks forward to uninterrupted guilt free
napping.

When is it time for fireworks?

In the middle of June we started back with chemo treatments. I am on Taxotere. So far no lung effects, or other major issues. I have been having weekly treatments and we are hoping to be done with them by the end of August. Because of the break in everything being so long, I was feeling pretty strong by the time I had the first treatment. Here we are a month later and I am feeling the chemo effects this round.

I had some stomach issues before from the chemo but by the time I got the routine figured out and what I would do or take and when for it, things changed. I am still having those symptoms, but I have been feeling more symptoms creeping up into the more than annoying category. 

I have neuropathy from treatments, watery eyes, bloody noses, sores in my mouth, nose and throat, and heartburn that doesn't seem to quit. The neuropathy thankfully is temporary and likely caused by swelling after each treatment. It goes away within a couple of days so it has been manageable. The other parts like eyes that won't stop watering are causing their own challenges. 

When your eyes water this much it gets hard to see sometimes, I wipe with soft things the tears that seem to collect in my eyes to keep from having sore skin on my face, but it doesn't keep the immediate area around my eyes from feeling raw. The nose bleeds have thankfully been minor and mostly caused by sores I can get a cotton swab to so I can apply salves to help the skin be less dry and uncomfortable. I watch what I eat with the heartburn, but I still end up taking medicine for it fairly often.

When I went into chemo last week I complained that the mouth rinse from the dentist is only giving temporary relief from my soreness of my tongue. Think back to when you have scalded  your tongue on something much too hot, that burning sensation and tenderness last a couple of days and your mouth heals and you move on and just expend a little more caution when eating or drinking. My tongue feels like the burn of that, the inflamed, sore, swollen tastebuds, dry and forever tender. Eating is a chore, my sense of taste has mostly disappeared from it so a lot of foods are very unappealing. Between the heartburn and the sore tongue even bland foods are sometimes a challenge to eat.

The other big challenge I have been facing is fatigue. Someone described fatigue versus tired in a way I appreciated. Tired is a feeling you have when you just need some sleep to feel better. Fatigue is a feeling of being very tired, but no matter how many naps you take you won't feel better from it. I am fatigued. 

We have been slowly starting to work on the rest of the upstairs portion of our remodel. I pretend I am a really good helper a lot of the time and Husband does pretty much everything. I sit and tell him measurements or help him think through the next steps. It's frustrating for me. I want to be up helping and doing and working hard, breaking a sweat right next to him, and I can't seem to find the energy. One day while he was working on the remodel, our big Kids were helping Husband and I was "supervisor." I was such a good supervisor that I eventually grabbed a pillow and laid down on the carpet where I could see what they were up to. The next thing I knew I was waking up in the middle of the floor wondering where everyone had gone to. This fatigue thing is no joke, and yet I can deal with being fatigued way better than I can with the nausea and mouth sores.

Six out of the twelve rounds of Taxotere down, we are halfway there. Here is hoping and praying that we can finish out strong and I will be able to see this through so we can move on and finish this war against cancer. I told Husband that when it is all said and done, we will have a big cancer-free, wedding anniversary and my milestone birthday to celebrate. I told him it feels like it will be so big we will need to find a huge way to celebrate - like cue the fireworks big. In the mean time I am going to need to start dreaming up what we will do to celebrate and find a way to make that a reality.

We are so thankful for the love, support, numerous prayers, meals, flowers, thoughtful gifts and kind words. Thank you for the grace shown me when I don't have it in me to respond, or do the things I would normally do. People giving rides and hanging out with my family. Friends who are survivors of cancer who lend a listening and understanding ear when I just need to have someone commiserate with what I'm feeling or going through, you have saved my sanity more than once. Thank you all for understanding that chemo saps my strength and sometimes messes with my brain being able and functioning like I would like it to be. 

In the mean time, God is good. We are so blessed to have been given what we need when we need it, and He is taking care of me minute by minute. 

I hope you can take some time to see His hand in your life today. Know that you are His child, and that you are loved immeasurably. Maybe you can share some of your love and light with someone else who you come across today. I know it always helps me when it's shared with me. 

Just like that, June is gone like a breeze

It has been a while since I last posted here. Life has a way of sneaking up on you and it seems that just like that June was gone with the breeze.

I spent 3 weeks after I got released from the hospital recovering from the pneumonitis. The steroids they had me taking to help my lungs to heal did their job and I was feeling better. One thing with the large doses of steroids was that I felt like I could pick up a bus on some days. I had to keep reminding myself that even though the steroids were making me feel like the Hulk, I was a person who needed to realize that I am not that strong right now. 

As the steroids tapered off, I felt much more myself. It was a nice respite that I am so thankful to God for. I was able to take the time to rest, reset my mindset and be thankful to know that in the end I will feel like myself once again even if it doesn't always feel like it when I am in the middle of chemotherapy and recovering from surgeries. The reminder that there is light at the end of the tunnel felt good. 

Since being released from the hospital, we were able to finish some of the downstairs part of the remodel that has been going on in our house. We sent kids to camps and they came back ready for hugs and to tell us all about what they got to do there. We had friends who took my littles and gave them a chance to go swimming. We had time to snuggle and talk, time to feel peaceful, and time when I felt good enough to make some meals. It felt so good.

I have had 2 CT scans since being released from the hospital. The first was to determine if my lungs were healed enough to start back into chemotherapy. The second one was for the pulmonologist a couple of weeks after the first to confirm that things looked good and we were able to see that there wasn't a new pneumonitis beginning. Both scans gave my medical team and us the reassurance that I am doing ok. 

I also met with my surgeon to see what she thought about how things are going. She was positive and felt like I do that the tumor is shrinking. The chemo is doing what we wanted it to and I am headed in the right direction. There are still questions and things to consider as we move forward, but I am happy with the progress being made in my cancer's treatment.

Round 1 of 12 and sicker than before

 At the beginning of May, I switched from AC chemotherapy to Taxol for the second half of my chemotherapy course. I had prepared and talked with Doctor about side effects and the potential for things that could happen. I felt less worried about most of the side effects of the Taxol, but I was feeling worried about the potential for neuropathy. I had some neuropathy when I had the AC chemo so we had made a plan for cold therapy to help with prevention during Taxol treatment. 

When I went in for the Taxol treatment I felt anxious but optimistic. Nurse prepared the ice for the cold therapy and we made a plan for how things would go. Because it was a new medication we took the first round of this new set of medications slowly. As I sat with my feet and hands in buckets of ice for an hour I realized that they were not nearly as painful or worrisome as I had originally thought it would be. They hurt from the cold but not much and with a blanket on my lap I was able to feel warm everywhere else and only cold under the ice. 

With the Taxol treatment completed, I was optimistic that this would all work out ok. We went home and I spent what time I could with the kids before they all had to leave. There was a marching camp for one, Girl Scout bridging ceremonies for others, honors society induction for one and a choir concert for everyone to attend. This was the kind of day I normally plan in detail. I figure out how we will get everyone where they need to be and when, I coordinate with them for who needs rides from people outside of our home and make a plan to be in the right places at the right time. This day, instead of doing any of that, I helped to make sure they all had a plan in place and sent them out the door with a kiss and best wishes. 

Knowing that they were all doing the end of the school year activities and demonstrating their achievements it was hard for me to send them off without going too. Maybe I could have snuck in or found a way, but it didn't feel safe with just having had chemo that morning. My heart felt a little jealous that Husband was there taking photos and giving hugs and applause to each child. I cried as I sat on my bed and tried to figure out if there was anything at all that I could do. 

The next day, Friends came over and were helping to work on painting our home remodel. I put on my mask and sat to the side to spend some time talking to them for a bit. It was nice to feel like I am still a person. I felt better than I thought I would that morning and I was hopeful that Taxol wouldn't be so bad. 

By Friday afternoon, I felt like I was having some bad allergies or a bit of asthma. Saturday morning I woke up and got winded walking the 15 feet to the bathroom. From there I began a fever, chills and body aches. I was told to watch and wait, I took the prescribed antibiotics and acetaminophen for the fever and waited for my body to feel better.

I didn't feel super sick, it was really focused on my lungs. I felt the fever and chills as my temperature would spike. I went in 3 days the next week for fluids and more tests to try and determine what was causing me to feel so awful. By the following week I was no better off. 

My breathing was labored, I was having a hard time getting in a full breath. My heartrate was sitting at 120 laying down and would spike with movement. I would move and it would cause lots of coughing. My lungs felt burned - like when you go for a run when it's cold outside, but it didn't ever stop. If I held still I was stable, but any movement started a coughing fit that nothing was working to help. 

I was finally admitted to the hospital and after 11 days of fever and cough I found myself sitting in a hospital bed being tested for even more while they sent oxygen and medication my way. At the worst I was on 4L of oxygen trying to keep my sa
ts up in the 90s. I was blessed with an amazing team of nurses who were oh so good to me in all the ways that I needed. They laughed and cried with me, they commiserated over the next test, poke, prod or effort. They asked to see photos of my children and family. Husband came, Friends came, and Religious leaders came. I was definitely being cared for in all of the best ways anyone could but it took time to decide that my damaged lungs, sepsis and fever were being caused by the Taxol. 

I was in the hospital for a week. Between the being sick at home for 11 days and the week in the hospital, I missed every single end of year activity for all of my kids. In the big picture it isn't much and they all survived, but it still stings that I wasn't able to be there when my heart and brain were perfectly capable of wishing it to be so. The kids made pictures and signs for my hospital room. We never let them come visit though, mostly because I didn't want to scare them with all of the machines I was hooked up to. I video called and only showed my face with the oxygen cannula and that was enough to make some of them worry a lot more than they already were - I promised them that I would be alright and be coming home soon. 

Once the Taxol was found to be the culprit Doctors switched medications, did a blood transfusion, and I started to feel much better pretty quickly. Within hours of them giving the treatments I started to notice a difference in my breathing and how well I was feeling overall. I went from barely being able to transfer from the bed into a wheelchair to walking the halls with the physical therapist in a very short amount of time. I went from people wondering if I was at death's door to being released and sent home with a prescription and new set of follow up appointments. The pink came back to my cheeks and the pallor of death was swept away.

All along the way I felt reassured that it would all work out and that I would not in fact die no matter what things looked like in the moment. I felt comforted and loved, I felt at peace. The hardest part was waiting for the answer that Doctors were working so very hard to find. I am so thankful for the blessing of being able to breathe without assistance and for the ability to receive the treatment needed to heal me. 

Since being released from the hospital I am feeling much better, I will tell you more about what I have been up to later. In the meantime, God is good. He is mindful of each of us. Thanks to Him and each of you for being on this journey with me. 

Pink or Rose colored glasses

Pink 

Pink is MY color.

Pink is the color of my Mother's lips when she tucked me in at night when I was still small.

Pink is the color of my favorite jelly shoes then and my favorite animal at the time - flamingos.

Pink is my color, my best cousin's was purple so we always knew what was whose.

Pink is the color of my bandana that I just couldn't see myself going to middle school without.

Pink is the color of my cheeks when kids teased, stole from me and bullied me in middle school.

Pink is the color framing my best friends' smile as we went on adventures as teens.

Pink is the color of my favorite marking pen to use when I learned to study and immerse myself daily in God's word.

Pink is the color of the blanket that a thoughtful friend and his Mom gave me before I went to college.

Pink is the color of my shirt when my special someone first held my hand and danced me across my apartment floor.

Pink is the color of my cheeks when my future husband first brushed his lips against mine.

Pink is the color of the flowers at my wedding - flowers that were symbolic to us and our personal story.

Pink is the color of the bleeding hearts in the tiny garden of our first home.

Pink is the color I didn't choose for our nursery because I felt there would be more children in that room and I didn't want to have to repaint.

Pink is the color of each baby's lips as I nursed them and looked into the eyes of someone straight from heaven.

Pink is the color of chubby hands and feet as children grew and wanted independence but still needed me for just about everything

Pink is the color of their favorite shirts when they were little

Pink is the color of the first lip gloss one of my daughters applied skillfully on her own. 

Pink is also the color of breast cancer. Pink - my color now has another meaning. Not one I wanted or would have ever chosen, but one that was thrust upon me. Pink is the color I will now be associated with as a breast cancer patient and survivor now and forever. 

Part of me wants to give up on pink to shout that I have been violated by this monstrosity creeping into me.

Pink is the color of a prom dress I could barely open my eyes to appreciate when I sent one off to prom - because the pink of cancer was taking my strength.

Pink is the color our skin would be had we gone on the vacation we were planning when the pink of breast cancer came crashing into my life.

Pink can mean a lot of things. 

Pink can mean whatever I ascribe to the color - I get to choose. 

Pink could be the rosiness in my cheeks when I feel better and am able to go hike, cave, garden or help a friend. 

I don't have to force myself to wear rose colored glasses, I am good at finding pink along the way, something I will continue to do. Maybe that means I AM wearing the rose colored glasses - but it's something that I am ok with. 

I wonder where I will find my next pink and who will be involved in the story of how pink is still my color.