From Elisa Again

Well, here I sit at 6:30ish in the morning. I should be sleeping for about 25 more minutes, but I couldn't. You see, my beloved is heading to his first infusion. It is supposed to help control his pain. I'm home with the kids. I'm trying to think how many families that I know that have a parent with cancer, another parent with an undetermined autoimmune disease, and two kids with a rare, terminal genetic disease. Hmmm, maybe you know another family. I know a small group of people that we call FAmily that may fit into this category. I guess I'm just reflecting on the fact that we do have a rare journey ahead of us. As you know I am a woman of faith. So, we will take this journey that is unfolding, and try to live it to the best of our ability. I do believe, with all my heart, that there is a loving God, that is holding us through this journey. No, He did not make us suffer. Just as we as parents do not make our children suffer. He allows our life to take its course. He allows us to make our decisions, and live the life that we have. Just as we encourage our children to make the most of what they are dealt, and pray that in the end they are strengthened and their journey shows the fruit of their struggle, so God allows us to journey for ourselves. I pray that through this journey that our hearts will be refined and purified. That we will be stronger, more compassionate, less greedy, more ready to truly love. I had a scripture brought to my heart the other day from the book of Malachi.

For He is like a refiner's fire and like fuller's soap; He will sit as a refiner and purifier of

silver, and He will purify the sons of Levi and refine them like gold and silver, till they

present right offerings to the Lord. Then the offering of Judah and Jerusalem will be

pleasing to the Lord as in the days of old...

While I would like to think that this world is meant to be perfection, it is not. We live in an imperfect world with suffering. May we always have hearts that give purpose to the suffering. May we be purified for the perfection that awaits us in God's heavenly kingdom. May we be refined in such a way, that God's face will shine through our lives.

Well, after my reflections this morning...here is what has been happening on our journey lately. I know it has been a while since we updated, a lot has happened, and I'm a wordy lady. So here we go, I hope we can enjoy this time together.

Well, I have two immunotherapy infusions under my belt now. The first went well. It was on January 9th. Along with the immunotherapy, I had an injection to strengthen my bones. I will only get this every other treatment. I felt great afterwards, and the next day. Then day two, I woke up crying, and nauseous. My nose was out of control. I couldn't stand the smell of anything. Food was the worst culprit. I was also extremely fatigued. I would say that on days three and four, I had a hard time just even keeping my eyes open. I would nap, get up a do a couple things, then lay down and nap again. Around day five I could see the light at the end of the tunnel, and by day seven, I was back to my new normal. What ever normal is????

I was grateful for this reprieve over the next couple of weeks. We just kept on keeping on. People are still gifting us meals three times a week. I cooked many of the meals in between, and felt great about it! (Weird fact...my body has been craving meat, specifically fish. Most of us, have thus decided to start eating some meats again. We eat it in small quantities, but I have felt much better since this started again.) I love to cook for my family, and miss the times when I am unable. During this time I also had the biopsy on my nasopharynx. I am happy to report that this went off well. I did great under anesthesia, and pathology reports came back clear. We do not have another cancer that we need to worry about at this time! We can just fight one cancer! Praise God! I also had my first CT scan since diagnosis. We received the results this past week right before my second infusion. The scans do show some growth in my lung, in my right back pelvis, and in my left rib cage, and along my spine. Before this worries you too greatly, please let me explain. It was explained to us that with the treatment that I'm on sometimes there is a "pseudo-growth". That means that cells are getting ready to fight the cancer and it makes it look like the cancer is actually growing. The only way to know if I do have "pseudo-growth", is to scan again. We want to give the immunotherapy time to work though, so we will be scanning again in March. This will give us a good picture of what treatment is doing for me. The only other thing of significance in my CT scans is fluid collection in my muscle in my right pelvis. They think this might be what is causing my pain to escalate again. If you recall, radiation had helped my pelvis pain quite a bit. We are trying to take a conservative approach since my body is going through so much right now. I am currently on an antibiotic regiment to see if it is an infection. I don't see a difference in my pain yet, so I will call my doctor today to report. The plan is then to put me on a steroid to see if this affects the fluid collection. If my pain does not come down, then we will rescan and see where we are at. It may be dead tissue from the radiation that I received. We just have to wait and see at this point. I am in close contact with my doctor.

On January 30th, I had my second immunotherapy infusion. I did really well again. Anthony met me there, and we sat together. I'm not sure if this will work every time, but I'm grateful that it's worked out for the first two infusions. I did really well the first couple of days. My fatigue set in on day three, and some mild nausea. I'm also starting to wonder if this medication may act as a depressant to me as well. I've had some decrease in appetite, and a little sensitivity to smell, but nothing like last time. I am curious to see if it is due to the combination with the bone strengthening medication. I guess we can see next month. I had some wonderful friends helping out to watch Sarah & Daniel. I had a bit of a low grade fever right before my infusion, then was pretty tired after. I can't say enough about our amazing community who continues to support us in such amazing ways! Anthony and the kiddos have been taking great care of me. I am starting to feel a little back to normal. Last night I had another low grade fever that we are going to need to try to figure out today. I'll be in touch with my doctor as her office opens. Sarah had a cough that she is getting over, so our Cincinnati trip that was supposed to happen today has been cancelled for now. I guess that is good, based on my body temperature. Our amazing nurse is working on rescheduling us in the near future. I guess it is never boring here.

We had another blessing this past week as well. We had new front steps poured that should be ready to walk on today. Our previous steps were too steep. Some other men from our church are going to replace a beam for our porch, and put a railing in so I can use the stairs more safely. We are forever grateful to all of you who help us in so many ways! From the prayers, to the meals, to the childcare, to the continued financial support, we thank you! Your love, prayers and support are such a gift to us! You acting as God's hands for us, is what gets us through the hard days. I think that about covers it. Thank you for being on this journey with us! We will continue to keep you updated as we are able.

I do have one more favor on my heart. If I may ask prayers for the kiddos who suffer. I know two kiddos who are going to be starting bone marrow transplants soon. I know countless others who are going through right now, or dealing with the effects of having gone through. I know another young lady who has been battling severe nausea since this past July. Another little girl battling chronic pain and fatigue. I know a boy who used to be able to run and jump, and now is in a wheel chair unable to even swallow for himself. I know it's hard to suffer as an adult. Please pray for these children. Please pray for their families. Thank you for joining your hearts to ours! Thank you for your love, support, and prayers! Jesus, we trust in You!