Betsy (Elsen) Nus's Journal
Written 13 hours agoWe made it home from Mayo last night. My sweet husband was kind enough to drive us down on Tuesday and pick us up yesterday. It was great to not have to worry about the drive/weather. Betsy faired the assessments and evaluations with the two new specialties, psychiatry and pain rehab. She was not feeling well, but pushed through the fatigue and weakness and was able to sleep the entire way home. She has been accepted into the pain rehabilitation center program and has put her name on the waiting list. This is an intensive outpatient program at Mayo, it is a comprehensive 3 week program. Again, she is a unique case though. The intake nurse said that they have had some cancer patients in the program before, but not generally those living with active cancer/tumors. Patients are typically in remission. But, they are still wanting to try to help her as best they can. We need to research extended stay lodging options and the logistics of who will stay there with her when she does start the program, sometime in the next 2-3 months. But I have confidence that this will all work itself out.
Our hope is that she will be given tools to cope with the day to day pain and improve her quality of life.
She has a couple of follow up appointments in January, as well as scans.
Love and Peace!
Lori, Betsy & family
Written Dec 10, 2013 9:37amBetsy and I are heading to Mayo Clinic this afternoon for appointments tomorrow. Please keep our travels in your prayers. She will meet with psychiatry for a med evaluation and more importantly, an appointment with the pain center for an assessment that will hopefully get her into their program, if that's something she decides she's ready for.
This program has several options which we are looking into, in hopes that she is a good candidate. Betsy's tumor will continue to cause her pain. This program looks at the many sides of chronic pain and they look at the medication regime, what works well together, what doesn't, other possible options for medications, P.T., O.T., spiritual and emotional health and many other integrative and complementary therapies, to give the patient skills to cope with constant pain, all under supervision of medical professionals.
Many thanks to her oncologist, for the time she spent on the phone getting Betsy these appointments so quickly.
I will update again on Thursday, after we arrive home.
Despair but not Defeat
Written Dec 2, 2013 10:40pmIf you all can look back at Betsy's journal entry, from August 16, 2013, you will read where she poured out her heart and shared a glimpse of her daily struggles.
Not much has changed for her since then or in months really. This week marks 5 years since that fateful trip to the ER that led up to the diagnosis of PleomorphicXanthoastrocytoma brain tumor. So many things have happened since then and so many things remain the same. Some good. Some not. Her scans remain stable and for that we are grateful. Her doc told her today she is doing much better than they had expected her to be doing at this point. That statement scared me, but also was very encouraging at the same time.
To bring you all up to speed, she is in a dark place right now. The head pain she has been dealing with daily since early 2009, has gotten the best of her. This is also a testament to how strong she is, because who do you know that could have held it together this long. Usually 3 days a week with head pain at a 10+ and the other 4 "good" days at a 3-4 pain scale range. Add in nerve pain in her upper back, neck and arms. She feels desperate for relief. The depression has taken over, we believe brought on by the endless days of pain, with no end in sight. She has a plethora of other chronic issues that we can deal with, but not this one. Not anymore.
Last week we began making calls to her docs at Mayo. Today we had an appointment. We had hoped to get her in with the headache specialist, but that can't happen until February. Her radiation oncologist, Dr. Laack, is the most wonderful, empathetic physician I have ever encountered. She and her NP, Denise, spent 3 hours listening today. Then Dr. Laack apologized for letting Betsy down. She said they should have done better at helping her manage what the disease has left her with, what radiation didn't kill. She is not going to let Betsy go down without a fight. Yes, she has a tumor. She is going to have pain. Everyday. But going forward, there has to be better ways to cope and manage this pain and the resulting and serious depression and anxiety.
Dr. Laack made a couple of med adjustments for the time being and is going to get a couple other specialty appointments in the next one to two weeks. I will go into more detail about those later, when we have more specific information.
We need Betsy to feel she has a future and hope for a life with glimmers of joy.
"For I know the plans I have for you, says the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11