We’ve been traveling quite a bit since I last posted. (If you would like to see pictures, you can see them at http://thelanfords.com)
The hospice team started Chad on steroids right before we left, in hopes of keeping the swelling down and improving his headaches.
We took the kids to Great Wolf Lodge. Had a lot of fun, but Chad couldn’t really participate. I started to notice little things that were “off”.
This past week, we traveled to one of NC’s beautiful beaches. Again, Chad couldn’t really participate. And I just knew something was really wrong; he was having more issues.
While we were at the beach last week, Chad had a fall.
I heard a loud noise and ran upstairs to find Chad on the floor and a little confused.
From what I’ve pieced together, his right leg just went numb and he fell. Since that time (Tuesday evening), he’s not been himself. He can’t really feel his right arm or leg and is having more difficulty walking. He is also having more difficulty stringing together sentences; he just can’t find the right words.
For example, he was in a tizzy last night about not being able to find his eye drops. He was adamant that he needed his eye drops and they weren’t where he left them (on top of his dresser). He was getting very frustrated, trying to explain what he was looking for. I found the eye drops, and he just grew more frustrated, and told me he wasn’t looking for those eye drops. Finally, I figured out he was looking for his chapstick. Makes for a frustrating experience for us both when he can’t tell me what he really needs and I can’t figure it out.
On Thursday evening, I called hospice after hours for the first time to inquire about additional pain meds. A nurse walked me through the medications in Chad’s comfort pack (a box of emergency meds I can use if he’s in pain or has a seizure) and we were able to help him feel a bit better.
On the way home Friday, I talked with our nurse and let her know the changes I’d witnessed this week and set up a consultation with the on-call nurse for today (Saturday). She came out and assessed Chad’s pain level and neurological health.
I knew something was going on. And after talking with the oncologist, the nurse confirmed that Chad’s new/worsening symptoms are signs for disease progression.
What does this mean?
Chad’s tumors are growing quickly. And they are causing pressure and swelling in his brain. The pressure is causing the numbness and loss of sensation in his right arm/leg, the word issues, and confusion. He is walking with a cane now, and drags his right foot. He actually has an abrasion on one of his toes from the way his toes curl under when he walks. (He had to remove his shoes at one point this week, in hopes of walking more steadily). He is unable to hold a fork or spoon properly, and is unable to put enough pressure on a pencil to make a mark or form a word.
His steroid and pain management plan has been increased. The steroids will reduce the swelling and allow Chad to have more quality time, hopefully. We’re still trying to find a pain management routine that works consistently, though.
We are almost done with traveling, as I fear that being so far from home isn’t the best idea in the world right now. The nurse and doctor told us that they were very concerned about us leaving again, but also understood what we were trying to do, as much as possible for as long as possible.
Every day with a meaning; every day a destination.
We are leaving again today for Tennessee, to visit Chad’s sister and brother-in-law. It’s quite a drive for us and I hope he tolerates it well.
We haven’t seen them since June 2009, and I am looking forward to having most of his family together for a few days.
Hi Skye–I wish you a safe and meaningful visit with Chad’s sister. We’re thinking of you as you set off; know our support sits in the back of the car with your luggage.
I’m so sorry about the disease’s progression. It would be nice if it could just stop for a bit, wouldn’t it? You are doing such a great job, particularly in how you use hospice. It’s wonderful how proactive you are about getting what you all need now.
Thanks for the update. We all think of you and hope for loving, close days for you, Chad and the girls.
Skye,
I am so sorry for what you and your husband continue to face. I think the visits you are making are so meaningful for everyone. Your girls see your strength, and strength in family. You are all in my prayers.
Skye,
It makes me sad to hear that your husband’s disease is progressing so quickly. It is so painful to see one’s spouse continuing to take steps backwards. My heart goes out to you today. You are in my prayers. I hope you will have a meaningful and memorable time with Chad’s sister’s family.
Skye…I just clicked onto your pictures…your daughters are so beautiful. You are doing such a terrific job…..with everything going on they still have smiles that truly radiated through my computer screen and brightened my day. I hope those smiles are helping your husband through this decline he is now experiencing. My prayers are with you while you are creating these special moments for all of you.