When the rubber meets the road

 Sorry to have missed 2 days! I have been making the mistake of waiting til the evening to write. I can not explain the sensation of almost panic when I am doing anything - brushing my teeth, for example. I have to lay down.  We went in for the three times a week clinic visit yesterday. The NP suggested I take Zophran scheduled, every 8 hours and Zyprexa at night to help with the nausea. I'm committed to that until we go back tomorrow. I have probably not taken enough of these meds on top of the others to really see them work.  I called the BMT line of APPs (Advanced Patient Providers) last night. My left shoulder hurt more and more and I wasn't sure about taking Tylenol or Advil (they don't want you to mask fever which is very serious right now), or they gave me Oxycontin, which I didn't know if it is safe with Zyprexa. They made sure it did't sound like a heart attack, told me to take the prescribed amounts of all 3 and to go to the ER and call them if that didn...

 Hi There out there in the world. I got out for a walk (in the wheelchair) with my sister and sweetheart. The sun felt so good but some of the meds I am on make me burn easily which could bring on GVHD, so it was short and sweet. My hubby brought up some things from our home about an hour away. Candy loaded us up with food. Sooooooo thoughtful. I opened up more cards that had piled up at home. Thank you! That's about it. The fatigue is unbelievable. And I generally just don't feel well but I wouldn't call is nausea. Lots to be thankful for but I'm pooped so...night night.

 Fun distraction is good ... and a 4 hour nap! My little sis came into town yesterday to give Andy a break and make sure I am OK. She really is taking care of me - to say it plainly, I'm a little loopy. 17 + meds 3 times a day and all different at different times. I've resorted to a wheelchair because my legs are made of Spaghetti.  She married into an Austrian family. She and my brother in law have been teasing that now I should speak German (my donor is a 20 years old German woman).  Here's how she shows up. I could not stop laughing.. She got all her detailed instructions from my hubby. He has been so great. I'm usually on all my medical stuff myself. I really could't right now with the extreme fatigue and loopyness...Of course my sis was a quick study. Here she's learning how to do a Heparin lock of my central line. Not much else to report. We've talked and laughed. Went into the clinic and they adjusted a few things. In-and-out for lunch and then the mo...

 I am laying here, waiting for. my hubby to get here with my sister who will be giving him a break for the next 5 days or so...I realize we forgot to post yesterday.  Yesterday we went in for the first of the 3 days per week visit to "clinic" at which they do labs and I meet with an APP, Advanced Patient Provider. I actually went in my PJs. I just don't have the energy for the smallest things. The three hour appointment went well. Our biggest concern is getting enough good calories in when absolutely nothing sounds good. I take about 20 medications with each meal, which doesn't help. And I've thrown up a few times after eating, unable to determine if I got the meds or not. We just move on and hope for the best but I'm doing all I can to ensure that doesn't happen. They said yesterday that a medication I am on for another 18 days can be really hard on the GI tract but "you won't feel human for 6 months or feel like yourself for a year." They a...

 Hey everyone, Andy posting tonight. Unfortunately Cath threw up a very yummy Shepards Pie that Hailey made for us. That was about 7, a half hour after she ate and had taken her evening meds. The amount of meds Cath takes is crazy, a few of the critical ones are taken 3x a day, with many others sprinkled in throughout the day. I had to wake Cath at 9:30 this morning because I didn't want her med schedule to be condensed for morning and Noon. Ideally she should have her morning meds at 8 am. I'm going to have to get tough with her!😂 Cath had such a wonderful nights sleep, no nurses checking in every 3 hours. I hope she gets many more to come. Her energy levels are still very low. Her first clinic appointment is at 10:30 am, to draw blood and then get evaluated by Dr. around 11. On her non clinic appointment days, Tues.,& Thur, Sat & Sun. I get to flush her Tri-port with Heparin. 3ml in each one. A sterile procedure that isn't hard but following the steps is the key....

From yesterday, forgot to hit publish, my bad. From about 10am. I awoke praying, giving thanks for his granting me so many big things Lord, but could you please stop this game of whack-a-mole with all of symptoms that seem to be something different every day. I will have some big stories about the days of hallucinations and let's just say I have a staff worried too. But I'm feeling much much better and my energy level is a little higher, but I'm still on motion restrictions so I have to wait for them I decided to retest to see if I could possibly get off of the alarms bed and chair so that I can move around and pack and stuff a little little today. Of course the nurses are rolling their eyes of getting out of here by one it's more like getting out of here by four, which we kind of knew. But took the doctor at herface value. I'm excited to start phase 2 of this adventure and see where that leads us. I hope everybody has a wonderful day today. Love you all very much. ...

 Where to start about today, Great news:                                               White Blood Cell count yesterday - 2.7.  Today 7+.   Yay!!!!                                                          Platelets -  Yesterday - 62.   Today 103                                                                      Neutrophils - Yesterday - 2.16. Today 5  If I had the energy, I'd look up the spans for normal. I'm just pooped.  A new probably response to ...

 Good evening,          Andy is posting tonight. Since returning to Anschutz from 4 day break. Thanks again TerTer!(Cathie's sister Terri-Amazing support Angel!) Returned on Valentines Day about 10:30 am. Honestly, even though I visited Wed. for a short drop-in, I felt uneasy being away from my Sweetheart. To me, Terri had the tough overwatch because Cath was at a low point in this process with her blood counts at almost 0. And knowing our merciful Lord, He has heard all the prayers for Cath and knowing His immense love for us, Cathies bloodwork continues to shoot upward each day.  So much so, the discharge nurse gave us a 1 hour point by point post hospital instructions to follow to continue at the apartment we will be staying at across the street from hospital. All of it is important in keeping Cath healthy and free from sickness as she continues to fully heal. Which the Dr.s say is a 6 month to 1 year timeframe. Cath was in a very animated dream sta...

Happy hearts day! My secret to a happy heart forms the acronym, SAG Sag stands for surrender. Oh how many tears I have cried, usually in church, working on the painful process of surrendering my loved-ones, especially the boy. But doing so an then watching how wonderfully wonderful. The next is A for accepts. I think off all the things I've thought i deeply wanted, expectantly in relationship, only to disappointed and discouraged. As i accept what is, i get to enjoy the moments as the come. And lastly is G, gratitude, is right up there with forgiveness and a superpower! Live is fleeting, humans are eternal Its always the time to SAC. Yesterday I couldn't do much more than struggle this uncomfortable bed to call the nurse, struggle to situate myself i bed after using the bathroom, and literally until the next interruption, My being so sleepy caused by the Ativan for nausea and anxiety. It could be from the humongous cocktail of chemicals flowing through my body. Besides thyroid ...

 Hello everyone, The doctors did start new drugs for a UTI late last night. It took quite awhile to start to work. This is not a good time to get an infection!  So the doctors feel like they have it under control at this point based on her labs etc.  Unfortunately,  Cathie did not sleep again last night so today she is extremely tired and dealing with all the effects of the transplant too.  New drugs and her body is very sore, achy ( from the harsh drugs from last week ) and from laying in bed all the time because now her blood pressure is doing crazy things. More on this later.... Cathie tried to take a walk around the nurses station with help from the nurses to move some muscles but that was cut short due to " extreme exhaustion." The doctors say this  all is "normal" at this stage of the transplant.  The extreme exhaustion will be around for several weeks to a month.   I'm sure when Cathie feel stronger she will give you more details. Plea...

 The last two days have been trying new drugs for bone pain and nausea and I believe they have a good combination now.  The little food that Cathie eats now is staying in and not making her sick, but she really doesn't  have much of an appetite ....She is trying to eat but mouth sores are a problem.   Its hard to get a good night sleep at this point of the treatment as the nurses are always checking on something but Cathie is able to fall back to sleep and long naps during the day. She also is possibly dealing with a U T I now so more tests .... we shall see.  Andy

 Woke to wretching with strong anti-nausea meds on beard Then night nurse heard me complaining about the shoulder pain.  She asked if I'm taking Claritan. One dose and I feel so much better.We also put Nolan's nice camping mat on the bed for me. Diarrhea and hemmoroids are better,  I'm so grateful.  My BP was so low they almost call a team in. So now I am on an alarmed bed. I still find it difficult to talk on the phone. Got the sweetest Valentines box from my big sis, And another from Andy's cousin - so fun and kind! Patty has been through much of this and it shows in her thoughtful gifts.  Thank you for soft pashemia, Andrea! I still open cards sent ahead by my dear friends, Susie and Sheila. I got alarmed that Platelets from a person with B+ blood was given me . The doctor brushed it out off by a "theren't aren't too many red blood cells in there.

 Hi.  I was put on IV Platelets last nigh because mine when too low - we need them for clotting and wound healing. 'the are so scared for us to fall or insure ourselves. It improved my numbers right away. I feels good to know my big sis and I donated platelets the the process of Apheresis fir years,  anything I do just wipes me out.  My nurse is trying to get me a better bed. My hips and back of my head hurt because I lay down so much and the I have to sleep on side on this bed made of bricks.  I'm sorry that's all I can do now. The nurse just reminded me ....I will feel good again.  God bless and keep you1

 Not feeling great. I need to move but the more I do the worse I feel.  diarreah and hemmoroids. I don't want to take anything because people are usually painfully constipated.  undectable white blood cell count (that was the goal - now my immune system is wiped and a new one starts to graft.  abnormal EKG surprise-I'm told nothing to worry about. mouth sores. I thought I was using "magic mouthwash" but I wasn't.  ate some wonderful wedding soup with meatballs but then threw it all up.  the highlight of the day was a visit from our son and daughter in law. I always love chatting it up with those two.   

When I was first diagnosed, I heard snippets about "the cancer personality." I thought to myself, "Great, I'm a 2 on the Enneagram which has taught me that much of what I've done for others has actually been for myself. And I'm an SJ on the Myers Briggs which has taught me that I can be a rigid know-it-all." I am over dramatizing, these are great tools and this doesn't even begin to describe what these tools really say.  Essentially, in my words, "the cancer personality" is generally understood as one in which a person, surpasses anger and doesn't take care of their own emotional needs. It's the person that seeks to please others as a compulsion, not a choice. It can be a person prone to depression. Hmmmmm.  When I first went to see Dr. Kirsten West, ND and President of FABNO, the Fellowship on the Oncology Association of Naturopathic Physicians, in Boulder CO, she gave me a list of to-do's. She is just one of the many many doct...

I feel like I'm in a time warp, for sure. I've been here 11 full days now and if you told me it was 4, I'd believe you. I might be repeating myself.  Things continue to go as planned. My White Blood Cell count is (point) .1 . Not much lower to go there. Normal is between 4 and 11.1. Red Blood Cell Count is 3.17 with a normal range of 4.18-5.64. And Platelets are 42 when normal is between 150 and 400.  We are all taking all the precautions we can. We've decided to just FaceTime with our kids and grandkids. The adults planned to visit and give my hubby breaks but one son was just diagnosed with Influenza A and Chicken Pox has be plaguing the young families in our life. It's strange that I lose all built up immunity to illnesses I have had and, if I had any immunity left from vaccination. I've always been curious about having my titers taken to see what immunity I still have from vaccines and childhood illnesses but never did. The protocol here is to redo all the c...

 Hey Crew.  It was a pretty uneventful day. After what very well could be (is) MY LAST CHEMO today, I am weak and kinda miserable.  Thank you, my support system. I have whole walls dedicated to cards from Susie, Sheila, and Judy. Today I got yet another goodie box from Judy. Thank you, my friend. I have to say the best moment of the day was when I got the letter from my granddaughter, Eden. I was afraid it got lost in the mail. So much love!  My sweet hubby has decided, with the info we have, for him to be at the gym and stuff so he ran 30 floors of stairs. I'm telling you. I got a good one! Sponge bath because I couldn't face the shower. They are nice but the water pressure is so so low and it doesn't get hot enough. The do these medicated wipes that they heat which wasn't as bad as I thought it would be.  I'm going to sign off with a couple of pics. I'm sportin' my new jammies and jogging suit (do they still call them that?) from my dear little sis. Love t...

Today was pretty uneventful. I generally don't feel well or normal but can usually plug along. The rash is pretty status quo. They still think it is a drug reaction and hopefully it's not like a drug they are still giving me.  The prep medications aways make me feel lousy. Nurse Addie gave me a cup full of pills to take and short after started to push an IV drug to battle nausea, I started vomiting over and over. We had no idea how much of any of the drugs actually got into my system but Nurse Addie said she went dumpster diving to see if any pill were in there and couldn't find any. I used the trash can; now I have a barf bag with me all the time because there was just no warning!  Without getting too graphic, my body spent the afternoon getting rid of what it didn't like in the bathroom. The nurse wondered if she should check for C-diff but things calmed down before she did and I don't have the other symptoms.  The chemo added today is called Post Transplant Cytos...

 I can't believe it has been a week here already! I really can't. It's been somewhat uneventful except I "failed" an Orthostatic test. They take your blood pressure laying down and then standing up. If the systolic, or upper, number goes up more than 30 points, you have to on an alarmed bed because they are afraid you'll have dizziness and falls. It's a real bummer when it happens. I already have to ask someone to walk me like a puppy and now I have to call or anything at all like using the bathroom.  It only lasted a few hours. They gave me a bolus of fluids and rechecked me and I was fine.  The rash is still angry looking but I looked back in my blogs to find I had a very similar reaction when I first started chemo here in July. They aren't worried unless it spreads quickly or shows some sort of skin disintegration.  Just sent Andy, my trouper, home to do laundry, pick up some prescriptions, and get a good night's sleep. Love ya. all

 Howdy.  Today has been a bigger challenge. I am shaky and my mouth is so parched to the point that most foods feel like they turn to sand. I've taken some nausea meds - trying to not let it get bad to the point it is hard to deal with it. I have a weird rash on my hands and feet. They drew lines around the foot rash to evaluate if it is spreading. I just really don't feel good, but it could be a lot worse.  The MD didn't get back to me this morning as to when I start the new (3rd) chemo drug. I can't believe it's already 6pm. I've napped between being taken out for walks by Melvin, the mobility specialist. Food is getting tricky but I had 1/2 of one of Candy's yummy muffins and a banana for breakfast. Egg salad sandwich with BBQ chips for lunch and it really was pretty good.  Berries and walnuts are plan for a munchie. I'm on so many fluids that I feel sloshy inside but my mouth is a whole different thing. I'm hoping the fruit is good and the walnut...

I awoke to the surprise of feeling pretty good and NO mouth sores. Yay! I try to remind myself to remember - things could be a lot harder at this point!  After a busy morning, it seemed, on my phone and with staff coming in and out a lot, gowning up with double gloves and masks - to make sure they don't share my cooties with anyone...rolling their eyes most of the time. It was time to gear up for the transfusion of cells.  Our son, Mason, and his lovely wife, Lara, came which was so great. They live pretty close by. They were here about 1/2 hour before they brought me Benadryl and Tylenol to head off some of the more normal side effects from getting someone else's cells introduced into your body.  A little while later, my normal nurse and a transplant specialist nurse came in with the cooler - just like you see in the movies. It had come all the way from Germany - just for me. I am just so in awe of that. Both nurses stayed the whole time, watching for reactions.  Th...