Saturday, February 28, 2009

Staying Afloat

I was hoping Jayme would feel up to blogging this weekend, but that probably won't happen. We are doing our best to stay on top of the nausea, but, in turn, it has caused side effects such as dizziness and drowsiness. He is sleeping about 18-20 hours a day. Not such a bad thing when you feel the way he does.

The good news, chemo is over! The bad news, the side effects will linger for two to three weeks. When a patient completes their chemo treatment at the Cancer Center, the nurses make an announcement, blow some whistles and hand out a purple heart certificate. Kinda corny, but kinda nice. Jayme is a thankful recipient of a chemo graduate certificate and glad to have it!

Three more days of radiation and then the healing process begins to prepare him for surgery. We are so grateful that his chemo and radiation have stayed on schedule without major setbacks.

The feeding tube has been a godsend. He is getting all the nutrition he needs and I give him all his meds through the tube. He is able to chew and swallow ice chips, but that is all that passes his lips. He is hooked up to the feeding pump almost 24 hours a day, so it does limit his mobility. But when he feels up to it, we can turn the machine into a portable pump and he can carry it around in a special backpack.

All appointments for the Mayo Clinic in March are set. That facility is unbelievably organized and so patient/user friendly. We head up there March 23rd for two days of appointments, then home again until April 6th. Surgery is scheduled for April 7th.

I know I am repeating myself, so please bear with me. Many heartfelt thanks for all the correspondence regarding Jayme and my mom. And I certainly appreciate the recent help with food, laundry, dryer installation, grocery shopping, and household repairs. I thought with taking a leave from my job, I would have much more time to handle the everyday things... Not! Though, I do anticipate the schedule lightening up soon as he begins to feel better.

For those locals, enjoy the beautiful snowfall today.

Monday, February 23, 2009

Winding Down

Only seven more radiation treatments. And, he is in his final week of chemo. Jayme will surely tell you this has been the longest five weeks of his life (maybe mine as well!), but at least there is a little bit of light coming into focus at the end of some tunnel!

Jayme had minor surgery on Friday to place a feeding tube into his small intestine. All went well, though they kept him in the hospital for 2 days. The nursing care was great and necessary since they had control over the morphine injections! His pain is less and mobility is much better since his discharge from the hospital, even though he has to haul around a feeding pump and pole.

He is more conversational today than I have seen him in weeks. I'll take what I can get since he probably won't feel so good after his dose of Cisplatin chemo today. To jog your memories, that is the "grandaddy" of chemo and the side effects last way too long. I speak from experience from his first dose on January 26th. He will again be hooked up to a portable pump of 5FU chemo today as well, which he will carry around over the next 5 days.

I am hopeful that the feeding tube will alleviate Jayme's stress, worrying about getting down enough calories. As of now the pump runs almost 24 hours a day, but that will decrease by the end of the week as his intake increases. He even put on a few pounds over the weekend.

I have taken a leave of absence from my home health job so I can be home most of the time. However, I will be sneaking out and heading to Lawrence for KU's final 2 home games. Rock Chalk.

Thursday, February 19, 2009

Long, strange trip

.. what a long, strange trip it's been.

Thank you from the bottom of my heart for your calls, cards, emails, blogs, good wishes, prayers; thanks for all of it and from each one of you. I want you to know I've been equal and fair in not replying or talking to anyone. All I can say in defense is that it is very hard to talk to others. I don't think I've written an email in two weeks. So it goes.

Sometimes I get misty eyed because I feel so fortunate. I'm so grateful. My treatment has been rough and I know there are more hurdles to vault, but I'm so lucky to have such a tremendous support system in place, to have so many around me that love me? I think of others that have to go through this alone and how horrible that must be. I'm grateful for all the wonderful medical personnel that are helping, the great medical insurance, having a job where they want my recovery first, the wife, the children. I am so blessed. I am so grateful for ice water, my constant friend and companion. I guess I'm grateful because I know it could have been worse.

I've spent years trying to be a spiritual person, making deposits into a spiritual account, by praying and meditating daily or trying to be of some service to others without regard for return. I now make massive withdrawals from that account daily and I am here to tell you that that account is endless, and it's endless regardless of how many or what type of deposits you've made. I turned my cancer over to God (Universe, Higher Power, God, whatever term you wish to use; I don't wish to offend any) and He is in charge of how it all will work out. My job is to try and do what I think he would want me to do as best as I can.

Thanks to Anna and Caroline, the two oldest that were here all weekend for being so helpful, and, of course, Grace. The last few days have been about Mama; Kay has had her hands more than full with family logistics. The Roberts are a tremendous family and it is a privilege to be part of that family. I don't know if you heard it, but I think I heard a little bell ring last Thursday, early am. My guess is Mama got her wings. God Bless you Mama and thanks for everything you did for so many of us.

Wednesday, February 18, 2009

Moving Forward

My mom's memorial celebration was wonderful and so special. She would be very pleased. As always, thanks for all the support. It was great to spend time with all our family and friends and reminisce.

On to Jayme. He is feeling much better today. Unfortunately, that may change Monday when his last round of chemo begins. But for now, we'll take what we can get. He spent some time this morning listing foods he hopes to crave when he can ingest food again. As I recall a pear and a whopper were at the top of his list. All a good sign.

He went to the Cancer Center this morning for hydration and radiation. Then we had an appointment with Dr McCroskey, who is performing the surgical procedure to place a feeding tube on Friday. Jayme will spend the night at Menorah following surgery and we will be coached on how to do the feedings.

So far we are still on schedule for an April 7th surgery at the Mayo.

On a final note, please add my niece Amanda to your positive thought list. She is scheduled for colon surgery on March 24th at the Cleveland Clinic. Hopefully by the summer, both Jayme and Amanda will both be healthy and ready for some fishing and partying at the lakehouse!

Thursday, February 12, 2009

Sad news

My mom, Jean, passed away early this morning. She died the way she lived with class, dignity and grace. She had been ill for over a year and knew the end was imminent, and ironically seemed to have more control over her life these past few weeks than she had for several months previous. I will deeply miss her but will hopefully take with me her infectious love of life.

Her obituary will be in the Kansas City Star tomorrow and Sunday if you would like to view. For those out-of-towners, I would be glad to email it to you.

Slow but sure

Jayme is "muddling through" his treatments, as coined by the radiologist. He is working hard to get his daily nutrition, but is coming up a little short. So, it's been mutually decided by Jayme and his physicians to have a feeding tube inserted, which is scheduled for February 20th. I mistakenly thought his next chemo treatment was set for Monday, but appears my math is a bit off. His next round of chemo will be the 23rd. On a side note, he is 1/2 through with all his treatments!

I have been an absent wife these past few days, but he seems to be doing OK with encouragement via my cell phone. All the Findlay kids are home as of this evening, so the attention on Jayme will come in force.

Family and friends have always been a vital part of our lives and we hope to pay it forward as all of you have done. My mom lived that life so we will try to carry on the tradition!

Tuesday, February 10, 2009

Climbin' the Mountain

What a challenge this has been, much tougher than we both anticipated. However, we want all of you to know that the phone calls, emails, blog comments, cards, food, and well-wishes have gone a long way to make it somewhat tolerable!

Jayme had a weekend from hell. He couldn't eat and even drinking was a chore. Also, his salivary glands kicked into overdrive, just another annoyance to add to the thrush, throat ulcers and nausea. Even though the chemo was 2 weeks ago, we have been told the side effects continue for awhile. He will have another round, and thank goodness, his last chemo treatment next week. The radiation is daily and the side effects are cumulative, the more he has the worse he will feel. As of now the radiation has resulted in a "sunburn" in his esophagus and some fatigue. Wish I could paint a prettier picture. This is one mean cancer.

On a happier note, yesterday we met with Jayme's new best friend, Brenda, the nurse practitioner. A new battle plan was decided on and we put it into action last night. It takes both of us, but he was able to get down two high calorie/protein drinks over a two hour period. We felt quite good about that.

Also on Monday I spoke to Dr Nichols, the surgeon at the Mayo Clinic. We are scheduled for pre-operative appointments on March 25-26 and surgery will occur on April 7th. He was so gracious and informative. I had called up there to provide demographics about Jayme and was speaking to his secretary. I had a question regarding Jayme's treatment, so Dr Nichols got on the phone and answered all my questions. Now that just doesn't happen. Just confirms our confidence that we are going in the right direction when we head up I-29 to Rochester, Minnesota.

I will scale back my once hectic schedule over the next few months. All of our kids will be home at the end of the week as well as Claire, our 8 month old grandbaby. That will put a smile on all of our faces, even Jayme's!

Friday, February 6, 2009

The Mental Game

50% of the game is mental, the other half is mental. I drug Kay and the Nurse Practioner through the coals today, trying to get a handle on my sore throat, not being able to eat, and more. Bless the incredible NP, she met my volley with an amazing grace, calm and professionalism. It was a certifiable melt down. Thank you Brenda, you got the job done today. As is with most things you can't really explain, all of a sudden my world changed. It was like the turning over of a lake in spring, a ball reaching its apex and heading the other direction. All of a sudden, I owned my treatment.

Poor wife Kay has been walking through the world the last two weeks with a 190 lbs of dead weight wrapped around her ankle, holding on for dear life. I haven't driven a car or done much of anything, other than make demands on her. Which is OK, I know, but it had reached a breaking point. Not sure what broke, but I'm glad it did. I spent the morning and afternoon at the Cancer Center doing various things and when I got home I got in the car, went to the bank, did some paperwork there, ran an errand; a complete reversal of behavior. Tomorrow Kay is going up to KU for some Sam fraternity things, watch the Hawks play, and have a time that's not about cancer.

Imagine all of this, then put in a backdrop of your mom passing away slowly but surely. OK, I admit it, I married over my head.

Tuesday, February 3, 2009

A Better Week

We are so grateful the first week of chemo is behind Jayme. What a tough start. Yesterday we spent the afternoon at our new home away from home where he received fluids and three IV anti-nausea medications. That helped immensely. Today he is tired and fatigued, but is eating! The nausea remains, but is much less and more manageable. He continues to get radiation daily and will meet with the radiologist tomorrow for a weekly meeting. I am trying to get back to some sort of regular work schedule. Fat chance. But I'm making progress.

I spent some time with my mom this afternoon. She is bedbound and weakening daily, but inquires about all the grandkids and, of course, Jayme. Hospice is wonderful and has been such a comfort to both my parents. She is not experiencing much pain and tells me she is feeling "peaceful". My dad is her strength and I am in total awe as I witness his caregiving skills. He inspires all of us. Please add my mom and dad to your prayers.