Every day is different

Its Monday. It was supposed to be the start of a better week for Roger. Based on how the day progressed, I'm not sure what the balance of the week holds for us.... Roger is in intense pain from his tongue, through his throat all the way down the esophagus. You can see the pain in his eyes, in his body and the way he carries himself, and the fact that he just won't/can't eat much. Thank heavens for the IV fluids at the oncology center and the hospital. This may be what keeps him going for the next several days. Today we had a delay in getting the fluids because Roger's port was blocked due to a clot. It took a couple different attempts to reinsert the needle to the port and then to finally flush the port/vein with a blood thinner. The process is a little unearthing as you realize the nurse is trying to clear a clot which has formed. Its not unusual to happen...just a little scary...and of course Roger does NOT like needles to begin with. Marishka says its always the big burly guys that melt around needles. I know that to be the case with Roger and with my brother Alan. Me? Needles don't phase me in the least.

His tongue is swollen and has sores so its become pretty difficult for him to talk. If he does talk on the phone, its very briefly. He's better with texting for now. His relief is in the form of sleep when he can doze off. We're trying something new for the pain - hopefully it will help. I struggle, as would anyone, watching him flinch and wince with pain especially knowing that Roger has tolerated years of chronic kidney stones without pain killers. You feel lost knowing that you can't possibly do anything other than offer a tender touch, chase prescriptions, fluff or rearrange pillows, give foot rubs, try to find a food or drink that will be palatable...even if only for that given moment...anything to make the pain go away.

Roger's blood counts are starting to drop. The counts are "decent" today but will continue to spiral downward and with them will go any "good" feelings that Roger might have. Its such a brutal process that you go through with chemo and radiation. Hard to believe that my healthy robust lively spirited hubby has transformed into this sleeping giant.

We talked to Dr. Birhiray today. Its good having him and the wonderful, wonderful nurses there to cheer us on. Dr. Birhiray was exceptionally pleased with Roger's progress (even if we don't feel like we've made progress). He said that Roger is so much better than most of the other patients he sees - he said its more the norm for patients to end up in wheel chairs coming into the office due to weakness and also to end up in-patient in the hospital. So we need to clutch onto what the professionals say and focus on their positive view of Roger's progress. In an attempt to help keep Roger hydrated, he will continue to go into the oncology center daily throughout this week and next week as needed for fluids.

We will see Dr. B again in a couple weeks to discuss how Roger is doing and see when the surgery will be officially scheduled. So much to think about...

As we were waiting for Marishka to get Roger's fluids going this afternoon, we glanced around the infusion room. We saw a couple different pairs of people new to the room. After watching and listening to bits of their conversations, we realized today was their first day for chemo. It left us both with mixed emotions. We remember too vividly the first day...the terror, the feeling of being lost, the feeling like you won't ever take a full breath of air again, combined with the emotional struggle to remain "present" with clarity so that you can remember everything the nurses say and layered on top of all that the desire to not become emotional. Thank god for the nurses who help you hold on, help you hear, help you breathe....and generally ooze this sense of caring and love. I tell you, it made such a difference. I just wanted to go over to these rookies (like we're old pros or something...how funny) and tell them, "just hold on and focus on each day, one day at a time - take every hug offered to you, it will give you strength - ask loads of questions and take notes and don't be afraid to say you don't understand, and remember remember remember there is an end to the process...its a marathon and you'll get there."

We know that we are half way through this marathon for Roger. We know he's doing well all things considered. We know that we have the continued love and support of you, our family and friends, to help pull us through this. We can't wait to get to the finish line and celebrate to with all of you.

He's snoring again. Its time for me to join him. All our love, A&R