Mid-Journey Decision

It's early in the morning, and I only have one good typing hand, so once again I apologize for the mistakes you might read ahead. I thought I better update you before I possibly can't use my left hand very often. Only a few people know what is going on and I wanted to make sure all of you who are so faithful to read the blog and keep up-to-date on what is going on were updated.


On December 30th when I saw my Lymphedema therapist and oncologist my hand and arm were at its worst. My therapist took some pictures and sent them via text message to her mentor who trains in Lymphedema therapy and also works with the expert in this field at Stanford University. My therapist was concerned that my arm and hand were not showing much improvement so she wanted a second opinion on how to proceed with therapy. Not only do I have extreme swelling but blood vessels are breaking all over making my arm look like one big bruise - this is not typical Lymphedema.

She found if she manipulated my arm at the same time it was elevated she was able to release some of the pressure. She believes that I probably have clogged blood vessels. She used a medical term for it, but for the life of me I can't remember it. She believed I needed to have a MRA which is just like an MRI but they are looking at the blood vessels specifically. After my appointment with her she called my oncologist to discuss my situation.

Once again Jim's mom, Judy (I just call her mom) braved the holiday traffic so she could be with me when I met with my oncologist. We have learned having to sets of ears helps during my discussions with the doctor. My appointment was at 4:15 pm and she arrived in the parking lot at 4:13 pm. Let me tell you that this shows true love. Thanks, mom!

We were both determined to figure out what to do about my arm and get some direction. I was lucky to be able to see my oncologist because she is so sick. Please keep her in your prayers as she is battling a bleeding ulcer. I told her I'm sure I would have one of those too if I had her job. I always say I don't know how she does it. Anyways...this is what was discussed.

It's obvious there is some type of blockage. Now, we need to determine if it is damage from radiation, or a tumor mass. My doctor did schedule a MRA STAT on 12/30 at 4:45 pm. Her assistant spent 40 minutes on the phone trying to get insurance to approve it, which they finally did. By the time the office called the hospital to get me to have the test no one was available till 1/3/11 due to the holidays. I was told if I couldn't handle the swelling or the pain got unbearable I was to go to ER (just not in Corona but in Riverside). My doctor wanted the PET Scan right away, and still does but realizes I need to wait until at least the 2 month waiting period to have it.

I spent most of the weekend I would say on bed rest. I laid around with my arm as elevated as I could get it and still be comfortable. It was the only way to keep the swelling down and the pain manageable. Sunday morning I woke up in extreme pain and it took several hours to finally get the pain under control. I was determined to go to church at night because for the very first time Jim and Matt were playing together on the worship band during a regular church service. I had waited for this day a long time, and didn't want to miss it.

On Monday, I was able to go to work and thought I would work long enough until they called me to have the MRA test. At 11:30 am I called and they said they would call me between 12 and 2:00 pm. At 3:40 pm I still had not heard and called again. I was then told that they had learned that there was no facility in our area that would do a MRA in the upper arm/chest area. They were now trying to schedule a Venogram. It looked as if it wouldn't get scheduled till Tuesday. I was miserable Monday night. I probably would have gone straight to the ER but I knew Katelynn had her doctor's appointment Tuesday morning to get her results from her MRI (I will catch you up on that at the end of this blog).

Yesterday morning after Katie's appointment I called the cancer center to see when the Venogram would be scheduled because I still hadn't heard from the hospital. In between calls I was once again keeping my arm elevated. I felt like I was living Monday all over again, except this time they strongly discouraged me from going to ER because they had the insurance approvals and if I went to the hospital it would be starting from scratch. I know this doesn't make sense but I have learned it's a reality. At 1:00 pm I received a call that they couldn't do the Venogram until they had a certain blood panel drawn from me. I was in no shape to drive because of the pain. Matthew is still off of school so he drove me to get the blood work done. The nurses and my doctor's assistant couldn't believe how my arm looked but kept assuring me everything is being handled STAT. Trust me I have to keep thinking of my definition NOT what we all think it should mean. It's disturbing when you can hear them whispering about you when you are walking away.

I have to say this has really been a nightmare. I have no idea why it has taken so long except for the fact you should never get sick during the holidays. No one is around to help you.

It's 1:55 am right now (I'm awake because of the pain) and I am supposed to be scheduled to have the Venogram sometime today. They tell me they will know by today which direction to go. Either I will see a surgeon to place a stet in my veins (their guess) or will start chemo to shrink down a tumor mass. My question has been, "How much longer do I go before I get relief from the swelling and pain?" Their answer, "Until we know what we are dealing with we don't know which direction to go."

Everyone around me is frustrated and willing to storm down the hospital. I don't have the strength. I just keep praying my arm will hold out and not break open. I keep praying that the damage will be reversible. I keep trusting that God is Sovereign and there is a reason for all this. This time I hope I get to see or understand the reason.

In the midst of all of this we learned that Katelynn's MRI showed no structural damage. In other words - they have no idea why her shoulder is in so much pain. Poor baby. She wasn't too pleased she had no answer - especially after going through that MRI. (Thank you for your prayers. She did very well considering she was so nervous she threw up as soon as we got there, and had big alligator tears during the injection. I keep calling her my warrior princess). I'm just glad that she doesn't have to have surgery. Her doctor is recommending more physical therapy and believes she needs to continue to see the Chiropractor.

The Murphy girls are a mess, and each one only has one good arm.

I have no idea what will happen today. All I can do is wait and pray. It's not that I just want answers - I'm at the place that I need answers.

Time to go back and get some rest....