I'm a firm believer that God gives you gifts large and small every day and you just need to be mindful to realize what they are and be grateful. That was certainly the case yesterday. We were sitting in the wonderful little house we are calling our Houston home around 9:00 am when Brenda's phone rang and it was MD Anderson saying that they had moved up our Neurosurgeon appointment to that day at noon!!!! Holy Cow! Remember that that appointment wasn't supposed to happen until the 21st so this was absolutely fantastic news. 

We jumped in the shower, got all our paperwork together and were out the door by 11. Needless to say we were nervous and exciting to get some advice on the tumors and how to deal with Brenda's horrible, disabling pain. Thank you God!! We were off to see Dr. Claudio Tatsui.

After giving a full rundown to Dr. Tatsui's nurse, Dr. Wolf, his medical fellow, came in to begin the appointment. She immediately said that the best course of action was to WAIT!!! No surgery should be done at this stage of the game. Immediately both Brenda and I thought,"How is Brenda going to deal with this pain?" She went on to say that the tumors were a little reduced and appeared stable. She showed us the MRI's from September 2018 and the one recently done in January. 

Dr Tatsui came in and confirmed what Dr. Wolf had already said. The tumors were stable and small and surgery just wasn't called for at this stage of the game. It could potentially cause more problems. Brenda was in so much pain that she just got weepy thinking that she would have to live with this. You know the hell that chronic pain causes...Brenda was totally into that hell and the medicine that she was on just wasn't helping. Dr. Tatsui did say that he thought that the tumors were NOT responsible for all the pain that Brenda was experiencing. He said that it was a combination of a lot of factors...the past surgery to remove the broken catheter, the radiation, muscle issues and bone issues. He said that he wanted us to see Dr. Christina Le, a pain specialist and he would arrange to get us in that day!!! Amazing! Another of Gods gifts.

Dr. Tatsui did say that it was possible for Brenda to use a pain pump which was implanted to deliver pain medicine directly to her spine. We were going to explore options with Dr. Le. So off we went to that appointment. This is the wonderful thing about MD Anderson...it's all under one roof so to speak with comprehensive communication. He had already communicated his advice and the particulars to Dr. Le.  Amazing! Why can't they do this in Phoenix???

So once again, we talked to Dr. Le's medical fellow before we saw her. She clarified what pain meds Brenda was currently on and where her most intense pain was. When Dr. Le arrived she did the same thing...poor Brenda, after sitting in hard chairs most of the afternoon was really hurting and I think the point was clearly made to Dr. Le that she just couldn't live this way. Dr. Le was wonderfully understanding and began her suggestions. First they would totally change Brenda's pain medicines to ones that might work better. Any adjustments could be made to those as needed through Dr. Le's office. She also talked about using a pain pump to deliver medicine directly to the affected site in Brenda's spine. When we said that we lived in the metro Phoenix area, Dr. Le said that she had a great referral for us there. She knew Dr. Lisa Sterns at the Arizona Center for Pain and Support and said that we should definitely make an appointment with her. She was very experienced with cancer pain and pain pumps. So God just gave us another gift! 

So we picked up part of the new medicine order at the MD Anderson pharmacy and we go get the other 2 meds today. We changed our flight and WE GO HOME TOMORROW!!!! That's another HUGE gift from God!! 

The other piece I forgot to mention was that we saw the resident in radiology with just one question...if it became necessary...could additional radiation be given to Brenda's spine?  The answer was yes but that would potentially cause additional problems with nerve damage and bone weakening. But the question was asked and answered. 

By the time we got home last night we were totally exhausted mentally and physically. What a wild ride that day was but all in all...good news and solutions on the horizon. All the prayers and good thoughts you all have put out into the universe have definitely helped us find answers. We will forever be grateful for all the angels that have come into our lives to help us alone this journey. 

Time to clean the house and get packed to GO HOME!!!!

Nurse Dee...and the sun is finally shining in Houston!!! Another gift from God!

Well some of you might know that I'm not a patient person! Now if I'm ordering coffee at Starbucks...I can wait. If I'm waiting in a short line at the movie theater...I can wait. If I'm in a short checkout line at the grocery...I can wait. If it's something critical and involves my loved ones or my dogs...patience goes out the window. Brenda, on the other hand, is so good at keeping calm during a lot of stressful times and waiting within a reasonable period of time doesn't seem to bother her much. I just don't know how she does it. So after waiting 6 days to hear back from M D Anderson on the scheduling of Brenda's Neurosurgery consultation I was about to loose my mind. I just needed an update on the process and why it was taking so long to make an appointment. I know it's a huge medical complex that sees tons of patients each day in critical, life threatening situations, but when we called they said they try (operative word) to get out of state patients their treatment plans within 8 business days. Unfortunately that's not happening in this case. GROAN!

On Monday we did get the Neuro-radiologist appointment which will be on Feb. 11th...next Monday. So thinking we could fly home this Saturday is just not going to happen. Brenda had called Dr. Lu's office yesterday but all you get are folks voice mail which said the call would be answered within 24 hours. You know what happened...NO CALL! So we decided to start shaking the tree to get some answers. Brenda always worries that I'll be a raving lunatic on the phone but I was very tactful and stressed how important it was to hear something so we could plan ahead. 

Between the 2 of us, we called about 4 different lines and eventually heard back around 2:00 that the Neuro Surgey appointment had been set. All-righty-then! That's the good news...we actually have something on their books. The bad thing is that it isn't until Feb 21st at 9:00 am. That means we'll be here another 2 weeks at least. Sure wish we could have gotten in sooner, but at least we have the appointment with Dr. Claudio Tatsui who specializes in spinal tumors and has revolutionized some unique minimally invasive treatments. That's really all we know now.

We'll try to fill up the time doing something constructive while we wait. I need to walk around and maybe if Brenda takes enough pain pills we can go over to the space center or the zoo. Yesterday all I did was watch a Netflix series and I can't do that every day...I'll go crazy! LOL! 

Hope you all are doing well and praying that these doctors can offer us treatments that will kill this damn persistent disease. We miss home but know we have to stay the course.

Hugs to you call..

Trying to be patient...
Nurse Dee

And a cloudy cool good morning to all our friends and family from Houston, Texas. It's been a very busy last couple of days and now that we're settled and have had our first appointment at MD Anderson with an oncologist, it's time for an update.

The flight here was uneventful and we landed at Hobby Airport in rain. We got the car...it was raining harder...plugged in the GPS and off we went...as it rained even harder. Of course it was rush hour which is not a pretty thing in any metro area, but it's even harder in pouring rain when you're from the sunny desert and aren't used to the free water from the sky. 

We found the little house that we're staying at. It was a very very generous act of kindness from a woman we had met the last time we were here. There really are angels out there that are so very willing to offer a helping hand. God bless you. The house is just perfect and so very cute. It's been newly renovated because of that huge flood they had in Houston a few years back and is close to the medical complex and super comfortable. Thank you Brenda G-J from the bottom of our hearts. We also got to meet the home owners wonderful daughter and her pit bull Star. We had a great time last night loving on her dog and talking with Kate. She has been so very helpful and a delight.

So now lets get to the reason we're here...our first appointment with the oncologist in the Head and Neck Clinic. Since that was where Brenda's cancer started (in her sinus), that's where we had to begin our journey. It's truly amazing how efficient they are at MD Anderson...everything is like clockwork and you actually get the feeling that you are important. They truly listen and want to help. Amazing! This was NOT the case in Phoenix but let's not go there or I'll explode and that's not pretty!! 

We met with Dr. Charles Lu. He had read the notes from Brenda's first visit 10 years ago and we got him up to speed on all the latest so he had a complete picture of what we were facing. He said that from the oncologist/chemo perspective they still use the same type of chemo for neuro-endocrine cancer...the cancer type that Brenda has. But Brenda's cancer has been persistent and is slow growing...that's one good thing...the slow growing part not the persistent one. As with the first time, the chemo didn't really handle the tumors in reducing them and he didn't recommend putting Brenda through something that had minimal benefits...if even that. Plus that type of chemo has horrible side effects...some of which Brenda has had to deal with.

We talked about the alternatives and made sure he understood that we didn't want to leave MD Anderson until we had seen all the professionals to get their opinion on how we should kill this beast. He said in the treatment of cancer there are 3 common approaches...chemo, radiation, and surgery. So he is arranging for us to see a neurosurgeon, a neuro-radialogist, and a pain management/support doctor. We told him that we will be here all next week and they are going to try to arrange those appointments within that time frame. 

So one piece of the puzzle has been answered and we await the other answers. Your prayers and good moe-joe's are so appreciated. Please keep them coming. Thanks to all our angels out there that are helping us manage the things back home. It really takes a village and we are so very lucky to have ours.

The weekend is upon us and we are relaxing and will visit some of the fun spots we found that last time we were here. We just need some time to catch our breath and recharge. I've got the beginning of a cold which I'm desperately trying to nip in the bud. Wouldn't you know it!! Too much stress!! Of course tomorrow is the Super Bowl so we'll be in front of the TV for that one. 

God love you all.

Nurse Dee (I'll be so glad when I can hang that title up!)