That’s how Tim and I feel right now. It’s been awhile since I’ve posted an update as I’ve been overwhelmed these past few months, physically and emotionally.
About 4 weeks ago, we went up to City of Hope to follow-up and see what they thought of Tim’s prognosis on stem cell transplant. Tim’s sister, brother, Aunt Joan and I were with Tim as we got the slap in the face. They told us a stem cell transplant wasn’t going to cure Tim’s lymphoma, that they didn’t recommend doing it, as his chance of survival were less than 5%. The oncologist suggested that we need to figure things out, that we look into other chemo treatments, clinical trials or do nothing. I begged for another answer, there’s got to be another option, an alternative, a sense of hope from the place that’s called City of Hope. I don’t think I’ll forget that day. Needless we were beyond upset and dissappointed.
So right now, we are determining next steps of treatment. I really want to improve the quality of Tim’s life, there’s got to be a promising a non-toxic treatment or combination therapy to reduce his cancer lymphoma and improve his well-being. Tim has been thru 4 different chemo treatments/regimens and 15 days of radiation since January 2010. His body responds to the chemo initially but after the 3rd or 4th session, but then the tumors come back and he’s been blasted by health issues that’s arisen from the intense side effects and his Crohn’s.
Since our City of Hope visit, I’ve been exhaustively researching and scouring the internet for clinical trials, alternative or naturpathic treatments, various experts, and calling doctors, cancer centers and lymphoma specific groups to get their recommendations or insight on what we should do. Tim’s sister Lori has also called some of the big cancer centers in the US and I still feel unclear on what the best direction will be for Tim.
Tim’s oncologist is recommending going back to a very low dose of Folotyn, the chemo drug he did 5 weeks ago, since it showed reduction in his tumors. Though the reason why Tim stopped taking it was because the harsh side effects—he lost weight and had bad stomach pains and cramping.
Another suggestion is the stem cell transplant clinical trial at the Fred Hutchinson Cancer Research center in Seattle. http://www.fhcrc.org/. Their bone marrow transplant center is the largest in the world.
Another thing that has been a hurdle with Tim has been these crazy swelling and pain episodes in differnt joints in his body. It first started with his right elbow in March.
This photo shows his elbow after they did an orthapedic surgery as they were concerned the swelling and pain was an infection or possibly gout, but after they did the surgery and they tested the fluid and it was negative for infection, it seemed to be somekind of arthritic episode, possibly from his Crohn’s disease. He went thru some drama and long recovery with his elbow getting back to normal bending function. After he left the hospital he had a physical therapist help him regain strength and mobility in his elbow and shoulder. His elbow is doing fine now, just has the staple impressions to remind him of that ordeal.
Then about a month later, his left knee had the same symptoms, but when he went in to the hospital, instead of slamming various antibiotics into his system, his hospitalist decided to not give him any and it the swelling and pain subsided after a week on its own.
However, this Sunday his right shin and ankle ballooned and he was in wrenching pain and we went into the ER. Another issue that’s been problematic is his shortness of breath. He had a significant amount of fluid in his chest cavity near his lungs so they did a partial thoracentesis and then put a cathetor in, and for the past 5 days (since Wednesday), about 3300 ml of fluid has been removed. That’s a pretty substantial amount! With this tube in his chest he’s been in severe pain and still has trouble breathing, but the breathing should get better once the fluid and tube is removed from his chest. So… we’re hoping for him to come home sometime this week. We can only take one day at a time.
Tim needs a huge wave of love and prayers right now. This current hospital visit has been really intense and emotional for us. Its been so brutal for me to see my sweetie in such misery and health obstacles, when we thought this hospital stay was going to be quick and simple. Especially knowing, that in addition to these other health issues, his aggressive lymphoma is growing and needs to be controlled.
If you know of any insight on refractory T-cell lymphoblastic lymphoma and Crohn’s treatments and/or doctor’s that we should connect with, let me know (firstname.lastname@example.org). We have a few conventional options and some possible alternative/naturpathic options.
Tim knows that his health is in God’s hands. And after my stubborn ego finally listened to the genuine words from an angel, I realized that I too, can’t control things, though I thought I could somehow, it’s too much for me to handle and decide, but God can.
Thank you for reading and for your continued love, help and prayers. God bless and big tight hugs!