Its 1:05 am
I wrote the following on 29 April 2013. This was a nightmare of a week.
Its 9:12 pm
Cold rainy day here in SE Michigan…sort of fits our crazy weather this year that is for sure.
Like to thank you all for your support of my interview with writer Jan Romes. I do have a giveaway tied to this interview if you have a Amazon account. Jan has graciously agreed to giveaway 3 copies of her e-book “Stay Close,Novac!” to the first three comments left. Hope we can find some readers out there who would like a FREE book! (Now if I just had a account myself…)
Been another up and down week here…
Had another wonderful visit by our friend and journalist Amy Lange,who dropped off a badly needed shower chair for Lori. This was an item (along with a wheelchair) that we have been waiting approval on for quite a while now. Amy came in and visited with us for an hour..she drove from her house AFTER putting in a hard day just to drop off the chair. I can’t begin to thank her enough for her kindness (as well as her mom,Judith).
I also worked up the courage to reach out to Don Neilson,Amy Neilson’s husband. I have written many times about Amy and her fight against breast cancer. Her openness and courage in sharing her story was an inspiration for this blog. She helped a LOT of people,including me,in understanding just what cancer is and does. While we are still fighting hard and hoping for the miracle,I know also I have to start preparing myself for the worst. There are so many emotions that rip across my heart and mind of the time when Lori will leave me for a much better place.
They say we cry,not because we are sad our loved one is leaving but the fact that we being left behind. I think I can agree with that,I am so not looking forward to coming home to a empty house,no kiss at the door,no ‘ploring,no laying in bed watching a cooking show…but I do find it bittersweet that even after Amy Neilson has left,she still is lighting a path for me…in the form of her husband who I will be calling next week.
I have never spoken to either of them via in person or phone but I feel like I almost already know them,the kind of loving people they must have been. I know the upcoming months are going to be brutal but I also know I won’t be alone,that my circle will surround us with love and compassion with our day comes.
Its has been a pretty rough weekend…starting with Friday night at 1:00 am when Lori woke me with having to use the bucket…which was the first of six incidents,we haven’t seen that since right before we had to have her admitted in March. We were up all night going through this…I had volunteered for a community project at work Saturday morning. I felt very bad that I had to call my manager and beg off because of what was going on…we started hydration early Saturday morning but the drip was soooo slow,too slow. I broke out another fresh I.V. line but still the drip was too slow. We called the visiting nurses who sent two nurses at two different times to try and solve our crisis. They changed Lori’s port dressing but to no avail,the hydration took all day to administer two bags. I called off work to stay and administer the hydration,my work was very understanding.
What really hurts about this…my hours are very limited at my job. I used to be able to work 40 hours with no effort but the healthcare reforms have caused many companies to limit part-time workers to under 29 hours so they don’t have to provide healthcare coverage. This means our income has been chopped badly and losing the four hours on Saturday will mean a smaller pay check…and I already had low hours to start with. Its a perfect catch-22….
While this was going on Saturday afternoon,our neighbor Marlene (Crash’s mom) came by and said there was a missing 5 year old girl in the neighborhood and the entire day watch of the Canton Police Department was out in force looking her..
I walked outside as a police officer walked up and asked if we had seen her. Marlene suggested looking in the child’s basement while I suggested they call out Poncho out of retirement to help look. That actually got a chuckle from the officer who said Poncho’s owner and partner,Brian,was already working the case with his new dog,Hoss.
After 30 minutes,the officer came by and said the girl had been found…..in her basement. Can’t say I was surprised as Marlene is a good mom who can think like a detective…she was hiding in the basement because she had gotten in trouble earlier. Just happy she was okay and safe.
I ran out of gas by 9 pm Saturday night and was out like a light within 30 seconds.
Woke up and went to work on Sunday,Marlene came by and helped Lori get ready for a visit from her cousins who live about 45 miles from us. We thought they would be here by 11 am but they wanted to come later so they could overlap with my coming home.
But since I didn’t know this,I went and got gas,picked up our blanket from the dry cleaners and faxed out some important paperwork before heading home.
It was 3 pm before I got home…but still had a lovely visit with Lori’s cousins. But as they could see Lori was fading,they all left at 4:30 for their ride home.
As I was hooking Lori up for another slow drip I.V.,Marlene came by and dropped off a dinner for me. Between that and some great pasta that our other friend Cheryl dropped off,it was the first back to back home cooking I had in months…and I was very grateful to them for going out of their way to help us. We really would be in a bind if weren’t for Kathy,Amy,Marlene and Cheryl. Thank so all so very much…
Sunday was rugged again….for the first time,I measured what Lori’s fluid loss compared to her intake…she lost 55 oz versus 20 oz of intake. I should have taken her in the E.R. but she said she didn’t want to go…
Today….we had our scheduled appointment with Dr. Johnston but no sooner had I hit Dixboro then Lori started having terrible pain…and it was getting worse. We had taken a Norco but this pain blew past it.
Got to U of M Cancer Center and went for labs….when the RN had a hard time getting a draw,it was then we learned we had the WRONG size tubing in her port. This was why we had such a hard time,but how two visiting RNs missed that,God only knows. The I.V. wasn’t working as well because of the wrong tubing.
They completely changed Lori’s dressing and got the labs done.
Up to the clinic we went,Lori’s pain is getting acute…in fact so much so,our visit was cut short as Dr. Johnston ordered us back down for a morphine shot and 2 full bags of hydration. God was with us again as we went down,the infusion clinic was getting full. But one of our nurses from local infusion clinic,Karen,saw us and instantly stepped in to help us. By now Lori is getting sick from the pain and I’m about to wheel her to the E.R. when finally after a 40 minute wait (it would have been longer w/o Karen) Lori was hooked up to a MS shot and hydration. We were there from 7:30 am til 4 pm.
So we are now home…and I’m writing this and hopefully,you’re reading it as well.
While I posted on my Wall about what was going on in the cancer library,a young man came in and wanted some books on how to tell a child about a parent’s cancer. His wife just learned she has breast cancer and she looked shell-shocked. The husband was getting materials on how best to tell their 6 and 9 year old that their momma is pretty sick. I really hope she can beat it….