When the rubber meets the road

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. ...

 Hi!  I'm still feeling really good. Thank you, Lord! I am weak and walk slowly and still want to lay down to rest periodically, but I can deal with that by trying to do more and more each day.  I have extremely dry itchy skin. I keep debating if my face has a rash or just dry skin that is irritated from me scratching and rubbing it. We will see Monday when I see an MD or NP at my regularly scheduled appointment.  I had some time with my wonderful daughter-in-law today after she went grocery shopping for us. My son cleaned up the place, kept me company, and saw some needs like groceries and met them. Then my big sis, Ter, flew into town. She already came to the hospital for 4 days to give Andy a break and had the fun of  experiencing me hallucinating. We really rested together with lots of time in our jammies and eating what sounded good at the time.  What a good day!  My hubby is still in CA. I'll have time now with my sister to talk talk talk and han...

It's a challenge sometimes, to identify when something wonderful happens and so many dear people are praying for me - Is the glorious fact that I no longer feel awful all the time an answer to prayer or a result of a drug shift? I am fine without knowing - I am just so very thankful that my only real symptoms now are total hair loss and the awe-inspiring fatigue, both of which I can handle much better than feeling terrible.  My hubby's 90 year old mom passed away today. He went to California yesterday to be with her and his siblings. Andy's mom 8.5 years ago with Andy and me. She passed with Andy holding her hand and reciting the 23rd Psalm to her. What a gift.   Our youngest stepped into to be with me for 2 days and a night and now our middle son is here for a couple days and nights. A friend from Al-anon will cover Friday morning so I'm not alone.  Mason and Lara come to visit. Mason stayed at the apartment with me while Andy went to CA.  They still have their...

 Howdy! I've had a couple good days. Taking Zophran every 6 hours, while awake, and then Zyprexa at night consistently might be my answer for the nausea and general feeling of being ill.  The fatigue is still here. A nurse described it the other day that my bones and muscles aren't working right is that they are recreating a whole new immune system for a full grown adult.  General schedule - When getting ready for your day becomes your day .... - take zophran under tongue when awake early and going back to sleep -take thyroid meds when 1st get up -take cup-o-meds with food -take zophran between noon and 2 -eat lunch and take cup-o-meds again -heparin lock (to make sure trifusion lines stay open) -bath or shower -nap - take zophran between 6 - 8 - dinner with another cup-o-meds -BLOG 3 hour doctor's appointment 2-3 times per week sorting pills - ordering needed refills Laundry - wash sheets weekly grocery shopping  Love to all ! 

 We go 3 days per week to "clinic" at the Bone Marrow Infusion Center right across the street. They check blood levels, ask me lots of questions, and I ask my questions too.  They help me tweak medications and I usually get a bag of IV fluids since my heart rate has been high (a sign of dehydration). It's easy to get dehydrated because sips of water make me nauseous. I do a hydration drink a couple times a day and have tried everything else.  We are usually there 3 hours.  Everything continues on status quo. Don't feel great, don't want to eat or drink, want to lay down all the time. My best pal leaves tomorrow. It's been a good visit and she's been a great caretaker,  I'm about 1/3 done with the 100 days. Dr. Haverkos dashed my hopes of being home by Easter but he said he may be able to let me go for the day.  Love to all! 

 My little sis went home and it was just my hubby and I for a few days. I've received terrific care.Then my Pal of 32 years came from Wisconsin for 5 days. It may have been my excitement to see her, but had 2 days of feeling pretty good. I ate really good yesterday and just felt better. Today I woke up feeling nauseous again, however.We did everything the same so who knows what gave me the reprieve,  Tomorrow I will meet with the Oncologist here at UC Health in Denver who specializes in T-cell Lymphoma. It's the first time I will see him, Dr. Haverkos, since we started this process.  I don't have much more to report.  Thank you for caring and checking.  xoxo

 Sorry. It's hard for me to do this right now. I heard a guy yesterday saying his family just doesn't understand that he can't get up to find the remote or hold his iPad to watch a movie. I'm fortunate, I have very understanding people taking care of me.  All is the same; I suspect I'm on a plateau for awhile.  Thanks for checking in.