After a week of traveling to Eugene for treatments, Mayleigh is quickly beginning to realize the situation at hand. 4-5 hours a day, 4 times a week were going to be spent driving in a car with a complete stranger who:
A. may like playing loud music, listen to politics etc.
B. Smoke cigarettes and doesn't mind everyone getting a whiff.
C. They may want to eat in the car at some point considering it is 2 hours.
Mayleigh, as I have mentioned, has misophonia (a sensory issue involving eating sounds) and coupled with not feeling the greatest from the chemo and not getting very good sleep, not to mention getting up at 4:30 am to leave at 5 to be in Eugene by 8 some days, has left her feeling very irritable at the fact that she has to deal with this for another 5 months and 3 weeks.
To remedy this we were able to get Doctor Sharman to give us a referral to speak with Dr. Cook in North Bend. He has been recommended a couple times by our PA as well as Dr. Herbis (ENT) and we were very excited at the thought of being able to administer her treatment right here in town.
On Monday, August 23rd we met with Dr. Cook and he sounded very skeptical but optimistic in that; he thinks he is able to treat her, but it will take the right coordination with many different elements that may or may not be doable considering our location. It's every difficult to get things quickly on the coast and blood is something that she will be needing on a regular basis. He would need to stick to the 4 times a week regimen and cannot stray from the path by more than a day.
He let us know that he has only administered about 3 ALL cases in his 16 years of practise so that doesn't scream to us that he will be the best person for the job but he definitely took into consideration all the obstacles and even made considerations for potential issues and wants the clinical trials team to monitor the process as well to align our community with this rare treatment. As he mentioned, ALL is very rare and people in this area do not see cases such as hers on a regular, if any, basis.
Today she had to be in Eugene at 8 am for a full blood panel and chemo treatment. She was able to get back in a decent time frame but she was exhausted. She pretty much walked in the house and went straight to bed. Her energy levels have been pretty bad lately and she spends most of her time sleeping or laying in bed. We did get her to come out to Sunset Bay with us for an hour this weekend but she has very little energy to do much which is understandable. Not only was the chemo making her feel horrible, the blood counts did not come back that good and therefore she is up at Bay Area Hospital again tonight getting a transfusion. Her red blood cell count is pretty low and she is going to need 2 bags of blood and will probably be released sometime early Wednesday morning.
Thank goodness again for my tenacious wife in making several phone calls to get this to happen correctly. She went round and round and at one point thought it may not even happen even though her oncologist was requiring it. Insurance obstacles coupled with so many hipa policies leave even employees clueless and it's really screwing up the information highway in hospitals. I have no clue how anything gets done honestly.
After speaking with Dr. Hunter, our PA, he was able to get us in to BAH and get her setup for the transfusion. I'm shocked it took even that but at least she is there and getting what she needs. Unfortunately, they were unable to draw anything from her port and had to stick her hand several times (painfully of course) before getting a worthy vein. Dr. Sharman had told us on consultation that from the MRI he could see that her port was sticking a bit too far towards her heart and that they needed to have it moved back out a bit. He wasn't extremely concerned but he did want it remedied asap.
We were hoping to hear a call back from Dr. Cook today as well as he was going to speak with Dr. Hays Lattin at OHSU to discuss the treatment and see if he would be a good fit for this protocol. He does admit his lack of knowledge but at least is confident enough to think it could be a possibility but will leave it up to Hays Lattin to determine her fate. We are all praying she can avoid these long days of riding in vehicles with unknown adventures. I know she definitely does not need additional stress at this time.
I will update as soon as we hear more but for now we just hope her system will sustain the treatment without delays. Transfusions sound like another addition to her regimen that will take additional time off her clock. She continues to push through though every step of the way with whatever is thrown at her. We love you sweetheart! Stay strong, sweet dreams and we'll see you in the morning <3
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