When the rubber meets the road

 So....it's been a minute.  It was hard when we came home from the apartment about 3 months after transplant. I expected to feel better. Some weeks later I realized I was finally feeling more normal. The yucky edgy feeling in my body had lifted. I think Andy (hip replacement shortly after I came home) and I became actually euphoric for a bit - there is nothing like relief from pain to make you feel great!  Emotionally it has been nice to leave cancer behind in a way I haven't been able to do for so many years. I think that is why I haven't been updating here for so long. I just celebrated the 6 month post transplant milestone. I had a PET scan about two weeks ago. I saw on the portal that some of the old lymph nodes on my neck were showing up again. We cancelled the scheduled removal of my port.  We met with the T-cell Lymphoma specialist (Haverkos) remotely a few days ago. He is wondering if the lymph nodes are from my having some dental work done the week before th...

 Hi all.  I keep thinking about the song, "Somebody Prayed." https://youtu.be/GVITQPGlI30?si=n3loXxLsO6dwWfIq And I am so grateful. I am in remission. I don't have T-Cell Lymphoma with the "dismal prognosis" of 8 years hanging over my head anymore. I am really in remission.  And my dear hubby is out of pain. He's only 3 weeks out from his total hip replacement and he is out of pain completely.  Now what, Lord? What would you have us do with our days now that you've listened to the prayers and healed us?  THANK YOU for any and all prayers, dear ones. I pray we all keep going to him with confidence and humility, listening, learning, and praising.  THANK YOU, Lord Jesus. Your ways are perfect. Help us trust you, no matter what. 

It's been a slog since my last post. As I think I said before, when I hit the 100th day since transplant, I think I expected to feel better. The fatigue and exhaustion, body aches, sore muscles, and incredibly stiff joints just plagued me. I'd wake up every day and not want to get out of bed.  To celebrate the 100 days and my finally going home, we went out to dinners with our kids and grandkids. It didn't end up all together because of a stomach bug but we had 2 nice dinners out. It was also Mother's Day weekend.  The little ones made art projects (I am happily running out of wall space). I love a little heart shaped jewelry box and necklace that remind me of our sweet love. And...I have a new prized possession that will always remind me of this special time and how wonderful my kids are.  They got me a very large bell that Mason has mounted out on our patio. It looks like the bells cancer patients ring when they have completed chemotherapy in the infusion center. Our ...

Even though they warned me, I guess I still expected to feel better by now. I am so weak and whenever I exert myself, I fatigue very quickly.  Part of the exertion issue is that my muscles and joints are so sore and stiff. I can't help but wake up every day with a to-do list that includes moving more, and I do now that I am home, but you can see the problem.  My left shoulder may have a rotator cuff tear, according to a physical therapist, but I can't have any surgeries for at least a year. Both shoulders have tendonitis in them, which is common with BM transplant, which is very painful. So...I know I've been very fortunate through this whole thing. I'm three months into what can be a 1 year process. The secret I suppose is to take it one day at a time, with faith in the process and hope for the future. 

Hi all. I feel so very blessed. There is no doubt that all the prayers and love have impacted how I've done through this process. We met with the head t-cell MD today. I had questions from the PET scan, Bone Marrow biopsy, labs, and pulmonary tests. We got 100% good news! We go back to Aurora twice next week and the last time May 9 (100th day since transplant). Next week they will reduce or stop some meds that make me so tired. After the 9th I will have a couple remote appointments with Aurora but will be monitored by the oncologist I used to see in Colorado Springs. I feel like I can see the end of this tunnel. I still need to be careful not to get sick before August, when my immune system will be better able to handle viruses and such. But all is well. Very well! Thank you for everything! Love to you all.

Things have been stable. Last week I had a Bone Marrow Biopsy and had the trifusion central line taken out. What a relief to be able to shower freely after a couple days. Monday I had pulmonary tests to make sure all the different chemo drugs haven't hurt my lungs. I don't have the results from that yet.  I still go in twice a week for extensive labs and a visit with someone: a PA, NP, Psychologist, Social Worker, Transplant Coordinator, a Post-Transplant / Survivability Coordinator, or the MD. I always see a nurse who takes vitals, flushes my port, and asks all the questions.  Monday we saw the psychologist who was obviously looking for signs of distress and trauma. They have PTSD groups, groups for people taken over by fear of reoccurrence, groups who feel lonely because of this experience... A few things came clear. My faith in this process as God leads gives me a different point of view and allows me to be grateful for the good things happening while recognizing but not dw...