Softy and tenderely, Jesus is Calling......

     Driving in the car today, heading toward the pharmacy to pick up yet ANOTHER prescription for Gus, this song came on my CD player. I had to keep hitting the replay button. I listened to it all the way to Walgreen's and back home again. I think I needed to hear this today.....
     Softly and tenderly, Jesus is calling.......
This has been another crazy week. Tomorrow, March 17th, St. Paddy's day to some, will be our Day Plus 50!!!!. Gus will be 50.... ( ok, of course his immune system will be.) 50 DAYS old. We are half way to the goal day 100.
    THE day.. Half way to the mark of when he can do certain things again without so much precaution, like play in the dirt, aka gardening,  swim in the pool, eat deli sliced meats, not have to wear his mask ( even though half the time he forgets to wear it now), nuzzle the dogs, stay in the room when I vacuum, and the list goes on.
     So, you are probably asking "Well, how is Gus doing now?". He has gained TEN very needed pounds. He is eating better and still struggling with getting enough fluids in him. He has been coughing a lot lately, so we went to the Doctor today for a culture. It came back POSITIVE for Influenza B. Google tells us that "influenza B is less common than A but still causes outbreaks of seasonal flu. The doctor has started him on Tamiflu, which doesn't cure the virus but will cut down on the length of the illness time. He has already taken his first dose. Guess I will get out the Lysol wipes again. And the spray. And the....etc. .well, you get the idea.
     Adam and I have seen a change in Gus' personality since this stem cell treatment. I try to tell Gus about it and it makes him very angry at us. He doesn't act out in front of other people but I see him lashing out at Adam and me more frequently. He still is forgetting where he puts the keys, or his shoes, or his wallet, or many other items. I understand that it is frustrating to him. I am literally praying that I can find a way to cope with this behavior. He is demanding of my time.... get me this, get me that, go do this, etc. I know it is because he doesn't have the strength to do it all himself. Some days he tries, and then he is down for 2-3 days.  On this past Tuesday, I went to help a friend all day. I came home and Gus and his friend had cleaned out all MY stuff from the garage. I just sat down and cried. It might have been junk to someone else, but I had new stuff in that area that they had just thrown out or taken to the DI (donated). I am still upset over it. Nothing of Gus' was gone that I could see. He told me he was doing it for me 'so I could park in the garage'. Hurrump......I am still parking in the driveway. And now I am looking for my bike cover (gone) and a new spring wreath to go on my front door, since my other new ones were thrown out. Arrgg...... It is probably just a mom thing.....oh well......
   Anyway, this has been a stressful week all in all. On the bright spot, we have received some much needed rain in our desert area. Today it is still cloudy and hopefully, tonight or tomorrow we will get some more rain.
     I understand the pressures on the caregiver of those that are ill. It is a balancing act to meet his needs and my own needs. I have cried more this week than any week yet. I think that is why when this song came on my CD today, I had to listen to it over and over and over.
I think it was a good reminder of where I need to place my burdens, and Who it is that will carry those burdens for me. And Who it is that will get me through these very changing life situations.

     Softly and tenderly, Jesus is calling.... Calling for you and for me. Patiently Jesus is waiting and watching, watching for you and for me! Come home, come home! Ye who are weary, come home! Earnestly, tenderly, Jesus is calling. Calling O sinner, Come home. 2) Why should we tarry when Jesus is pleading---pleading for you and for me? Why should we linger and heed not His mercies...Mercies for you and for me?  Come home! Come home! Ye who are weary, come home! Earnestly, tenderly, Jesus is calling. Calling, O sinner, come home!!  
     I KNOW where I need to turn for strength........

And our journey continues.........

   

   

The School of Life and Journey Update

I watched this episode of 'Music and the Spoken Word' this morning and thought it was very applicable for our life right now. I wanted to share this as the beginning of this post. Of course, the highlighted areas are my markings. 


The School of Life - Sunday, March 4, 2018
Have you ever thought of life as a school? There are some obvious similarities-both give us many opportunities to learn. Both provide teachers and tutors to guide our learning. And in life, as in school, we have experiences that could be considered tests, and they are rarely easy.
In life, the tests may come in the form of pain, sorrow, and disappointment. Despite what a student might tell you during final exams, academic tests don't usually require so much suffering. But if we think of life's hardships as a kind of test-as part of our education-we might find more purpose in them and even find them valuable.
A religious writer from the early 20th century said this about the school of life: "No pain that we suffer [in life], no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable…. It is through sorrow and suffering, toil and tribulation, that we gain the education that we came here to acquire."

As difficult as it sometimes is, the curriculum of life is perfectly suited to teach us what we need to learn. Life can teach us wisdom, refine our desires, and soften our attitudes. It can stretch us and help us grow and improve. And while life might seem a lot easier if it were pain and trouble free, it would not be sweeter. We know the sweetness of life because of-not in spite of-the bitter. We know happiness because we know sorrow. We appreciate light because we have experienced darkness.

That doesn't mean we welcome such tests. But when they come, as they do for all of us, it helps to see them as opportunities to learn and grow. After all, the most meaningful learning takes place outside of a classroom, in the school of life.

-Lloyd D. Newell

1. Orson F. Whitney, in Spencer W. Kimball, Faith Precedes the Miracle (1972), 98.

Isn't this great words of wisdom? When I heard it, I thought to myself 'I need to read this so I can remember this more'. So, I thought if I included here, I can refer back to it often. 

 

     A lot of people are asking 'how are you doing'? I wanted to give you some more information to help you understand more what is going on in our lives. 

     Even though Gus is home from the hospital, he is far from recovery. Living and caring for yourself at home after a stem cell transplant requires special care and attention for the first 100 days AFTER the transplant. Infection is one of the biggest risks patients face after a bone marrow or stem cell transplant. The treatments received before the transplant temporarily disable your immune system. It can take up to ONE YEAR for the immune system to recover completely. 

     Everyone carries germs on the skin and inside of the body that do not cause problems UNLESS a person has a weakened immune system. Transplant patients are at high risks for infections caused by these usually harmless germs. 

     Crowds of people raise exposure to harmful germs and viruses. Construction sites and homes that are being remodeled are also hot spots for bacteria that can cause pneumonia. Some of the activities that Gus CAN NOT do are the following: 

He can't clean up after the dogs. He CAN NOT sit on grass, logs, or dirt without a blanket. He CAN NOT allow his skin to have contact with soil, lawn waste or compost. He CAN NOT change the water in flower arrangements or even handle plants. 

     I found it enlightening that while in the hospital the nurses aid came in EVERY TWO hours to change Gus' drinking water. Even though it was  'good' drinking water, they did not allow him to drink anything that had sat at room temperature for more than two hours because of the possibility of bacteria growth that could occur. 

     Here we move to Southern Utah for the sunshine, BUT the chemotherapy that he received predisposes him to skin cancer, so he MUST avoid getting sunburned. He needs to avoid the sun, both indirect exposure and through windows. 

     FATIGUE: Gus will be fatigued more than you would expect, especially for the first few months after the transplant. He has to conserve energy when he can. It is even suggested that he brushes his teeth sitting down as to conserve that little bit of energy. Cancer-related fatigue is different than other types of fatigue. It can be overwhelming. Resting doesn't always help it go away, and it can take a while for fatigue to get better.

     Gus has to wear his HEPA filter mask when he is in crowds for at least THREE months after transplant. 

And this information was surprising to me: Gus will have to receive some childhood IMMUNIZATIONS again... Remember....EVERYTHING was wiped out with the chemo treatments. This certainly makes sense to me, but I hadn't thought about it at first.

      Gus will not be able to clean OR swim in our swimming pool until he is cleared by the Doctor. 

I am pleased to report that Gus is eating a bit better since we have been home. I think there is really something  to say for preparing your own meals. Today we had ribs, and Gus ate 1/2 slab of them. This was WONDERFUL for me to watch. Especially because he has lost 35 pounds during the past two months. 

     We have been given lists of food guidelines to be followed for patients with weakened immune systems. The DOs and DON'Ts are important. Sometimes foods that we eat can carry germs that can put him in danger. I didn't think about these things in the past, but as I read and reread these lists, it TOTALLY makes sense to me ESPECIALLY because of his weakened immune system. It takes me much longer now to grocery shop, because I am reading all the labels......is it PASTEURIZED, is it low in potassium, what is the sodium content, etc.  Small fruits that can NOT be washed are a no-no....like raspberries, black berries, etc. Strawberries are okay because they are large enough to be washed with out being smashed all to pieces. Can you get an IDEA of what it is like to prepared foods for him. I haven't even mention that meats, even pre-packed deli meats, have to be cooked to a certain temperature.  It is a general rule now that if the PUBLIC has access to 'it', such as salad bars, food from bulk containers, etc, that it is a DO NOT USE rule. He can not have anything from the deli that has been sliced because  the meat slicer could carry a left over on it. Also, he can not have SOFT SERVED ice cream for the same cleanliness reason. 

     If someone has been given a flu shot or other vaccine that uses a 'live virus', Gus can not be around them for 6 days. He can not be around someone who  has had the Shingles vaccine for the same amount of time. Of course, he CAN NOT be around anyone with a runny nose, or cough or flu, etc. 

     Gus has to use BABY PRODUCTS on his skin, hands and head. Other products are too harsh for him right now. He can not be in the room with me while I am dusting or vacuuming until 30 minutes after I am done. Everything needs to be as clean and dust free as possible. AND THE LISTS GO ON AND ON AND ON...........LOL.

     Now, maybe you can see the GRATITUDE that I feel from having my neighbors come in and SUPER CLEAN my home. They organized and reorganized, they dusted, and mopped, and wiped, and polished and did more than I can truly explain. It was totally the WORK of ANGELS. I could have never done all that they did. I am eternally grateful for their services.  

     As of TODAY,, Gus is day PLUS 36. That means that his immune system is 36 days old, just like a new born baby. Lots and lots of precautions still has to be taken. He still tires easily and has to take multiple naps during the day. He is still on hand full of medications but in two more days, that will reduce by three pills. !! HURRAH....that is a significant when you are taking TEN a morning, THREE in the middle of the day and FIVE at night. And this is a guy that pre-cancer would NOT even take a Tylenol.

     The one thing that I haven't mentioned is Gus' ability to concentrate. His short term and long term memory suffered from the chemo. It should come back. But, I find Gus struggling to find a word or thought at times. He has to be reminded a few times to do certain things....like "drink, drink, drink...Put on your mask, wear your hat. And the most common is 'NO you can NOT do that."  Yes, I have to play the role of mother at times.....

     Thanks for continuing this journey with us.  Now you can see why this thought struck me so dearly this morning:

No pain that we suffer [in life], no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable…. It is through sorrow and suffering, toil and tribulation, that we gain the education that we came here to acquire."

Until next time........