Julie and the struggle to get the right treatment

Been a bit since I (Julie Link, daughter of Mike Link) have written an update on what is happening.

First - the bad news is that Tim's son had a fright and is back in the ER/hospital- we are waiting on news from that. Keep him in your thoughts and prayers.

Second - We are switching neurologists for Tim since the last one just keeps upping his drugs and doesn't offer much else. His back does feel better, but his leg is still numb which we definitely want to figure out before it gets worse. He has done a pretty darn good job of taking care of me and now he needs to start some recovery. He has an operation that was put on hold and we want to get that started.

Finally - on to me... Last update was about passing out. abnormal heart rhythms and the ER. Since then, I have not passed out again, although I feel very faint all the time. My heart rate goes sky high whenever I move. This was on a Tuesday - Chemo was canceled for the week due to this.

My son, Matt Lyon, graduated with honors from Universal Technical Institute on January 26 - I was not well enough to go watch but my mom did fly down to be with him. I was able to watch the stream of it which was wonderful. Mom then came up to visit us from January 27-Feb 1 (she left super early on the 1st). The 28th we gave her a tour of Fort Mohave, Laughlin and Bullhead City. Next day was a trip to Oatman where we took her on a mountain road consisting of 126 turns (Old Route 66) and into Kingman. The following day was supposed to be Lake Havasu but extenuating circumstances prevented this... Don't worry, I was riding, not driving.

On January 30, I went in for a blood test with chemo expected on February 1. On the 31st I received a call from the cancer center requesting that I report directly to the hospital to get set for a blood transfusion. My blood levels fell super low, and I needed a red blood cell transfusion. Mom got to spend time with Tim while I went to have blood drawn for my blood typing at the hospital (Valley View). Unfortunately, the nurse could not get blood out of my port and sent me back to the lab to get poked in a vein. Mind you - she stabbed me three times through the port. The nurse was able to get it with one try through a vein. Since it's blood typing, everything had to signed by the lab asst and the lab director. I also received a lovely red band that I couldn't remove until the actual transfusion.

I went in on the 2nd (a Friday) for my transfusion at 9 a.m. Tim did not stay as it was a five-hour process. I had two bags of blood. I thank all of you that are able to donate for doing so. It really does help. I received my blood from the blood bank - again everything had to be signed by two people. She said that the transfusion should make me feel better for about a week. I may have to have more transfusions depending on what my platelets do. Due to my platelets being low, I bruise super easy - I have all these bruises on my arms and legs and no idea how they happened. I felt better over the weekend but have lost that feeling already.

On Tuesday the 6th, we had to go to Las Vegas to see the surgeon that removed all my parts for a check-up (I see him quarterly). He said he couldn't feel any large tumors which is a good thing, will have to wait until next PET to ensure all is gone. Still don't know when that will be, but I meet with Dr. Mohtaseb next Tuesday. On Wednesday, I went in to have my blood drawn for chemo on Thursday, but the blood results had not come back so no chemo. I have blood again on Monday, then chemo on Tuesday which is the new schedule.

Once chemo is done, I will move into radiation treatment for the endometrial cancer. One thing after another.

We are getting through this as best we can. I just want to be able to catch my breath. Again, I thank you all for your continued support through cards, gifts and donations. The transfusions add a $325 co-pay on top of the $125/week we are currently paying. There is no way I could do this if I didn't have all of you helping me. I appreciate all of you. I have sent out thank you cards to everyone I could - if I missed you, I am sorry. You are all the best!