When the rubber meets the road

I'm sorry I've been MIA. I haven't been feeling all that well. The fatigue and general sense of malaise is hard to explain. My mind has a running to do list, especially when we snuck home for a couple days to meet with a window installer and now again to get ready for Easter. A couple days ago, I had a bone marrow biopsy and had the trifusion central line that looked like an octopus sticking out of my chest pulled out. Earlier in the week I had a PET Scan, for which I asked lot of people to pray, last minute. "No evidence of Lymphoma." what a relief.  Today was my first shower in a few days. How great it feels to have all the bandages off.  I remember back to people warning me that I wouldn't "feel human" for 6 months. We've decided to have my hubby's hip replaced mid May since we both won't feel like doing much anyhow. August 1 (my 6th month mark) is our 38th wedding anniversary and we hope to both feel pretty good by then. In fact, we r...

 I've said it before - the Holy Spirit has been so kind in the way He has brought just the right person at the right time to help me and be with me throughout this process. I have just had 4 days with my vivacious, fun, productive, and loving dear friend, Michele. We are planning a RV trip with our hubbies to see the fall colors, historical sights, and many other fun adventures this Fall. She planned and I chimed in once in a while. We marveled at how perfect it was to have this time together to focus - when we didn't know before if I'd be up for it.  My hubby was busy "taking a break" from our little apartment. He spent a day with the grandkids at their house and had them at our house for a few hours. He even colored Easter eggs with them. He's so special.  Michele went with me to my appointment with my Survivorship - also called Post Allo Transplant Nurse, Rachel. I had my usual list of questions. The coordinator had a pretty extensive presentation about wha...

Hi all. We just met with the main oncologist who is very pleased with how I'm doing. Andy and I walked nearly 1/2 mile (total) yesterday to get lunch. It is good to push myself but my legs are heavy today so we will take it easy this afternoon. I remember when my little sis was here, I couldn't walk to the door of the apartment so I'm definitely improving. I'm nauseous today because a nurse practitioner thought I should be able to do without those meds so I tried going without, but I'm back on them so I'll be better soon. The doc knows we are going home for Easter but warns against crowds or anyone who is sick. He says I should be able to do what I want at 6 months (August 1) because, if I do catch something by then, I should be able to handle it. I guess that means no church or crowds until August 1. I have a bone marrow biopsy and PET scan next week. I'm certain we will be celebrating no signs of disease when we get those results. Andy asked when they co...

Text from Susie... If I could write one thing on your blog, Cath, it would be……also so you remember….. I was out there a month ago, taking care of my best friend. What a privilege it was to be there with her for a week and have Andy trust me to take great care of her. We had time to laugh and talk, I was there to take care of her, love her, it was nerve-racking and scary at the same time, she was so weak, and so frail. For breakfast, I might be able to get her to eat one scrambled egg and two strawberries before she had to take her medicine. Lunch might be a couple scoops of cottage cheese with a half a banana. Very little food, very little energy. She could walk about 20 feet. From a chair she would sit in to the kitchen door where her wheelchair was. I’d push her through the halls to get in the car. And then when we got to the hospital, I'd push her from the car down the long hallway, two long hallways to her doctor's office. Today was the first time I talked to her since I l...

I can't believe I didn't get any pictures when my big sister was just here for 4 days. She came in from So. Cal. to give my hubby a break and "sister" me as a friend put it. She cooked and cleaned for me and made sure I got up early enough to take my morning meds. She introduced me to some of her favorite channels on YouTube and even gave me a couple massages. She showed her love in dozens of ways and I thank God for her. I have 3 sisters and they all have come in to help us with this process. It has been a huge blessing to have the time with them and to have their help. We have a brother and his wife who would have come too but my hubby wants to be with me so we haven't had the need. Our other brother, the eldest, passed away Feb. of 2023.  I lied. I did take one picture while Deb was here having fun with the VR.  My good friend Tom sent me this information (below) as my labs were analyzed by AI which also created this graph. Tom uses his expertise and generosity...

Patience is a challenge. It's all about perspective. I am only on about Day 52. Or, I can realize how fortunate I am to be feeling well enough to feel impatient. No rashes, no temperatures, no bad labs. They expect people to need blood transfusions and hospital stays so I'm beating the odds and I need to remember that.  I walk a little farther every day and added some light weights tonight. I am always questioning if I could have been more active in the hospital but it really was a challenge being confined to my room except with a very busy staff person and then put on the alarmed bed.  I've very thin with lost muscle mass like I've never experienced before. Sometimes my legs feel like they are made of cement. Some joints are stiff and ache-ie. I have high hopes for rebuilding and getting into better shape for my new life without lymphoma.  I've extended the lease for the apartment we are staying at to be on the safe side.  Patience is a virtue. Virtue is a grace. P...

 Hi all,  Not much to report. I go in twice weekly now, for labs and either a nurse visit or provider visit and sometimes others have me on their schedule like social workers, dietitians (It is sooooo great to want to eat again!), program coordinators.  I asked the doctor a bit ago to help me understand that I have normal amounts of white blood cells, neutrophils, and platelets but they are still so concerned about infection. He said something about - there are other things that haven't recovered yet... I didn't really gain any clarity from the doctor so I asked a Nurse Practitioner who simply said, "You're on very powerful immune suppression (anti-rejection) meds and there are illnesses we don't know if you'd have enough engraphment to fight them off, even with antibiotics. Aha! An answer I could understand. I should be off these drugs by the 100 day mark.  I have only arranged for this housing situation across the street from the hospital until about day 80. ...