Plus Five

Today is day +5 from transplant. He is almost to the 'bottom' which means his white blood cells is almost to zero. The Dr told him this morning the next five days or so he will feel lousy. (What would the doc call what he has felt already????pre-lousy) Gus' energy level is gone. He has about 10 % red blood cells which the doc said would be enough to work his organs if he will 'get up and move around'. He made it from the bed to the chair....then the challenge will be the shower. That will wipe him out for the rest of the afternoon. The best news of the morning is that he was able to have a much needed massage. He continues to loose weight because he cant eat much. He can keep down a milk shake made with Ensure drink with added protein. The foid smells that come thru the vents are awful for his sensitive nose. The nurse brought him so smelling pads to hekp that and cold cloths for his head. Our adventure goes on......1/2 of day 5 almost conquered.
    For the time being, I have to tie his shoes, he needed a cane to walk with because of his weakness, and he really is doing his best to do what is required of him. ( Dr. instructions--five things: eat, drink, pee, poop, and eat. ) Our friends, Doug and Dayle left yesterday. Doug has been a light for Gus to follow. Doug is ten days ahead of Gus. Doug has been able to tell us what to expect and how to conquer it. I miss Dayle and Doug. It was nice to have them close by...
     Early this afternoon, the social worker came in to check on us. I have been so brave. Gus is working very hard to do what little he can do. It is SO hard for me to watch. I finally broke down and cried. I didn't think I would stop. I have been teary eyed for an hour now. I miss home, I miss Adam, I miss the dogs, I miss the blue skies and the clean air. I miss my neighbors.......I miss Hurricane........

Gus and our Friend, Doug Stewart

Day Plus One

Wow, my emotions are all over the map today. The social worker said that would happen to the care givers too. Gus is doing ok. He feels lousy but he is able to shower and had some breakfast. I got a much needed shower and was able to get our wash done. I am NOT allowed to use his bathroom in the room due to the fact that it is set up to monitor 'things' of his. Also, they are particular about germs, etc that might be on another body. There is a 'family bathroom' ten miles away. LOL OK, not really but it feels that way, ESPECIALLY when I have to get up in the middle of the night. There is a washer/dryer on this floor too that we all share. I was lucky to be up early enough to be the first one in there today. So, we have clean clothes for another few days, and I feel as if I have my household chores done.
For the update: today is Saturday, Jan 27th. Considered Day Plue 1. We arrived at Huntsman Cancer Center Hosptial on Thursday Jan 25th. (Considered day -1) Around 3:00 p.m., Gus was given the high dose of chemo to clean out any remaining bad cells in his body. Sadly, this also cleans out all the good one too. He did ok receiving this treatment. On Friday Jan 26th, (considered day 0, zero), he received his stem cells back. Once I figure out how to post pictures, I will add some really interesting pictures. He had to start chewing ice 30 minutes prior to getting the stem cells back. The purpose of this is to freeze the capillaries in his mouth so the cells stay away from his mouth and go toward his bone marrow. If he doesn't chew the ice, he will get horrible mouth sores not only in his mouth but all the way down his throat too. He chewed ice for two straight hours.
I thought that the process of re-introducing his stem cells back was amazing. Caroline, who is part of the BMT transplant team that aided in the collection or harvesting of the stem cells brought them all back in this container that looked like a high tech cooler. I am sure that it is. She told me that the stem cells are in this container at -180 degree C. Frozen, solid, in a perservative. She has three bags that hold 2.5 million stem cells that he is given back. She takes out one bag at a time and puts in in a thawing warm water bath to thaw the cells. He is them given one bag back at a time. The Caroline and our sweet nurse, Chidi, doesn't leave his side during the whole process. Between the two of them, the numbers are doubled checked on each bag of cells, verifying his name, date of birth, collection number etc. There are no chances of any mistakes. It is really amazing.
After the stem cell replacement was done, the staff surprised us by coming in and singing HAPPY RE-BIRTHDAY to Gus. They brought him a birthday balloon, a card signed by the whole staff, a warm homemade blanket, slippers and a hat to cover his soon-to be- bald head.
He had a problem shortly after the process was complete. It sent me over to my couch/bed where I began praying silently for a quick recovery. They were having a challenging stablizing him. His blood presser spike to an unsafe level and they had to call in the BMT dr on the floor. After about 45 minutes of intense work,he began to recover more in the normal range that he needed to be.
That brings us up to today.

Save your fork, the best is yet to come.......

I have many thoughts running through my mind. I hope they can find their way to my fingers. 

This has been a challenging ten day up at Huntsman. I think the main things is because I AM getting older. LOL. The demanding schedule was the hardest part of the whole thing. But guess what???? We were NOT alone....Not only there were hundreds of other people surrounding us going through similar challenges, there was a multitude of medical support staff all around us. We were NOT walking this path alone or blindly. People going through similar trials were so supportive to each other. They talked together, cried together and encouraged each other along. The medical staff was tender and understanding always asking : "How are you? What is your pain level? Can I bring you a drink? chips? A warm blanket? Or two incidences: one Nurse: My aunt and Uncle told me to come and find you. I live in Roy. They are Brother and Sister so and so. Guess what???? Brother and Sister so-and-so are our neighbors.!!!! (Mike and Marsha Schoenfelt) We were thrilled to make that connection. It made us feel as if we were close to home. And I believe....we received EXTRA, EXTRA special care because of that cherished relationship with our neighbors. A second nurse is moving to our old ward area. Her fiancé' lives down the street from the Ivie's. What another fun connection. She treated us really well too. 

     Staying at Hope Lodge ( American Cancer Society Sponsored)  in Salt Lake has been a blessing to us. We are meeting wonderful people who are going through similar experiences that we are going through. Together, we are walking this path and giving each other encouragement and support. I want to mention two incidences. I will call the first person, Fred. Of course, that is not his name. Fred can be seen walking the halls, holding on to his beloved wife as she slowly shuffles at his side. He is assisting her to the kitchen area to prepare her a meal. They catch up  with many new 'friends' they have met while there. They have swapped stories and adventures of years past. As we walked into the kitchen last Wednesday, we could tell Fred was sad. Another couple was standing near him. I heard him say ", They told us today that she is terminal'. He was speaking of his dear, sweet wife. The other couple threw their arms around him and he wept. We, too, told him how sorry we were to hear that news. Those loving arms around him knew exactly what he was going through and what exactly he felt. My eyes watered up and I realized that the strengthen we receive really does come from others around us that are 'willing to carry one another's burdens'. Their room was next to ours. That evening,  when I went into our bathroom, I could hear them through the wall. They were crying. All I could do was bow my head and ask Heavenly Father to comfort them at this time. It really did break my heart.  The next day, Fred and his wife packed up and went home. I do not know where that 'home' is, but I know he left with a heavy heart. I prayed again that the Comforter would buoy them up at this time in their life. 

    My second short story is about Melanie and Ashley. Melanie is the Mom and is always smiling. She goes about attending to her daughter Ashley, who I would guess is in her early twenties. Ashley reflects her mother's happy, positive attitude. Ashley is the patient. She has lymphoma. She, too, is going through stem cell replacement. Her skin is pale and her hair is gone but her smile is not. We met them briefly as few days before we left. Her story is one I want to learn more about when we return to Hope Lodge in a few weeks. Upon leaving, we found out that Ashley has been there ONE YEAR and will continue to be there throughout more treatments. I asked Melanie how she was doing as the care giver. She admitted that some days she felt like a zombie, moving through the motions almost without feeling. We both teared up. I so wanted to be able to 'give' Melanie strength. How does one do that? I listened.... I didn't know what else to do. I told her I 'understood'. I told her what I observed and that was 'she is a great care giver, kind and gentle and is doing a great job'. I know she felt and wondered if it was good enough. A year.....I could hardly imagine what those 12 months have been like. I went back to my room and little more humbled and asked again another prayer for someone I just met. I asked a loving Heavenly Father to please give Melanie the strength to continue to be strong for Ashley. And I asked for blessings to be with Ashley as she continue to fight the ugly battle of cancer.

      As I try to observe the many others around us in the collection clinic, I know they each have a similar story. I watch them and silently offer a prayer for them. Each of them are in different stages of their treatment. Some are also collecting stem cells, preparing for their transplant. I know they each have hopes that 'this will be the cure' and that they will be given many more years to have the chance to make more memories in their lives. I know they must be feeling 'I know this is hard, but it will be worth it'.  In 2 Nephi we read, " ye must press forward with a steadfastness in Christ, having a perfect brightness of HOPE, and a love of God, and of all men.  .... And in 1 Corinthians 13: 13, 'and now abideth faith, HOPE and charity.....

     We have a great HOPE in all things, through the strength of our loving Heavenly Father. I read a talk today that said.....'save your fork, the best is yet to come.'. I have HOPE of this too. So, save YOUR fork.......

     Thanks for continuing this journey along with me. 

In Scrabble, just hit shuffle......

     I often finding myself playing Scrabble. Yes, I am a word nerd. I love playing against the computer. Sometimes, I can look at the letters and find a word right away. But other times, I can't quite see clearly enough.....so I have to hit the 'shuffle' button. It is amzaing how clear new words become.
     That is the object lesson I felt after we finished the 'patient care' class that lasted 3 1/2 hours. We talked about the reality of depression, distress, and how distress in cancer care is not a sign of weakness.  We discussed foggy thinking, anxious thoughts, moodiness, overwhelmed feelings, physical signs that show up from added stress and the many ways that we can hit the "shuffle" button and look at things with a new clarity.
     When someone goes in for a transplant, the first steps they take are the harvest. That is what we are doing this week. They start by giving you shots in your stomach that will increase the red cell productions that will result in the OVER  production of stem cells. Gus will start this on Saturday. On day three, Monday for us, he will then be sedated and haved a port or as they call it ' a central line--Hickman' , placed in his chest. He will have three ports coming out of his shoulder that look like the cords on the back of a dvd player. Three different colors, three different backs ups as not to over stress one port over the others.  Then on Tueday, the draws begin. He will be hooked up to a machine that looks similar to the ones they use if you donate plasma. The red blood cells are pulled out of his body, goes through the cleaning machine that pulls out the stem cells and gives you your blood back. In and out.......in about  4-6 hours. This is done for three to four days or util they have about 10 million stem cells. It takes about 3 million stem cells for each transplant so the extra ones will be frozen and be saved if he needs any future transplants. Then we will come home and he will rest for ten days. Then we will return for one month for the transplant.
     I will blog more about the transplant  as we get to it. I will give you a peek into some information they gave us. It will be important to have a very special diet during and after transplant. At the beginning of the transplant, they give him high doses of chemo that will kill off all his bad cells and, sadly, his good ones too. So, with this in mind, they stress the IMPORTANCE of an immunosuppressed diet for 100 days after wards. the CAUTION that you have to take is amazing. This is where I will have to hit the 'shuffle' button again.
   Here are a few ideas about his new eating habits : If the public has access to it, DON'T use it. Can't use the fresh meat sliced at the deli, or the chesses. Everything has to be pre-sealed, vacumned packed. You can not risk ANYTHING that might be a risk of food-borne illness. He is limited on not cheeses such as blue cheese or roquefort, that has been made with molds. No more soft, over easy eggs for him.. No more rare meats, or non-pasteurized egg substitutes. No fresh salsa, no pre-cut fruits or veggies, no more buying the fruit trays for a while. He won't be able to even eat soft served ice cream beause you never know when or how the machine was properly cleaned. The food needs to be processed well. He can have breads and bagels. BUT the important thing I have to remember is that he will NOT feel like eating. He is most likely to have blisters in his mouth. What he does put in his mouth has to be of the highest benefit to him. I hope he will make friends with ENSURE drinks and protein shakes/smoothies. AGAIN,....it's time for another 'shuffle'.
The wonderful thing about this journey is that we are not alone. There is an amazing,well-trained medical staff ready 24/7 to be there for us.  Not only the Doctors, but nurses, phycial thearapist, nurtritionist, music therapy, cooking classes, group fitness classes, massage, and the list continues.
     Change: (noun): the act or instance of making or becoming different.
That is what CANCER does to everyone involved......
Thanks for taking this journey with us. ........ to be continued......