We went back up to see Dr. Kim, facial nerve surgeon , and Dr. Bradford, primary surgeon. She removed a couple of stitches from Kevin's eye that did not dissolve, which gave him relief. She is pleased with his face, (me too!). She changed his wound care on his left arm from zero form to wet to dry, but now changing it 3 times daily. His swelling has gone down...we are to take photos and send to her in two weeks.
Dr. Bradford treated his giant suddenly appearing out of nowhere bulge in his neck, ( the one that secretly had me out on a ledge that my friend Emily got the privilege of talking me down from". It was a zero a, at the place where his last drain was removed, and filling up with blood and fluid. She drained it.
She went over the path report with us. He will begin radiology in two weeks, and she confessed that she was very impressed with our radiologist in South Bend. We are also! There is a clinical trial which we will go on using chemo in addition to radiation, but only if it is available in our area. To date, there is no definitive evidence that chemo combined with radiation is more effective, hence the clinical trial.
Other than that, our visit was uneventful this time, but we did get to see our favorite resident from the hospital team! She is darling and bright and extremely good. We had a lot of fun with the teams when we were in house, and it's fun to see them.
We will see both radiologist and oncologist next week. The radiology team is amazing. The nurse is just an earth angel who radiates love and positive energy, and is hugs and prayers and white light. The scheduler is adorable, bright and funny and does roller derby, which you would never guess. Kevin is in EXCELLENT hands! The radiologist is very accessible, gives time and attention to the myriad questions I bring. Kevin talked to the nutritionist by telephone, and enjoyed her humor.
I suspect this part of the journey will be another set of challenges, but as I said, we have a great team getting us through it.
And we have our loving, supportive friends and family. All will be well,
Thursday, February 27, 2014
Care Giving
I have a friend who is a cancer survivor; 2 very aggressive types. She recently told me how special caregivers are... and while, I don't at all diminish the role we play.... right now, (today. Tomorrow may be different...) I don't feel particularly special.
Today... I look at my husband, and I am grateful, oh so grateful, to have him with me. He stresses over how "much" I have to do for him....and for us (extra housework, wound care, prepare special meals....) Today, I don't feel like I am doing "EVERYTHING". He does what he can to help, which is actually a lot... He prepares the coffee at night for the next day when I get up at 5am to prepare for running... he empties the dishwasher... he tidies... he picks up... he does what he can...
But mostly, what he does, is reach into the depths of his soul to make a connection with me, to let me know he is still that man, who loves me, cherishes me, and wants me by his side. And at night, when we are snuggled in, each reading, and there is just the quiet glow of the light from our bed, enough light to read by... I know to the depths of my soul (and I tell him every morning, and every night), I asked to be shown the blessing and the grace in each moment of this journey. And what I know is, EVEN WHEN it's hard... I wouldn't be anywhere else, and I am grateful to be the one to take his hand and walk through this valley of the shadow with him.
That doesn't mean that there won't be days... or longer... that I walk through my OWN valley of the shadow, when I will feel weak and scared and lost... but I don't feel like my piece in this is MORE diffiult than his! It's different. When we married, we were 50-somethings, and certainly knew a whole lot more of what better and worse could entail, as well as sickness and in health.... it's part of the package!
I know, from watching my sister, that there are times that make you soul weary when you are a caregiver.... but she never EVER gave up. And while she hated the disease, she certainly loved the man, and she went through harder times than I can imagine.... I hope through it all, I can always keep finding the blessing and the grace. I suspect as long as I am willing to seek it out, I will.
Today... I look at my husband, and I am grateful, oh so grateful, to have him with me. He stresses over how "much" I have to do for him....and for us (extra housework, wound care, prepare special meals....) Today, I don't feel like I am doing "EVERYTHING". He does what he can to help, which is actually a lot... He prepares the coffee at night for the next day when I get up at 5am to prepare for running... he empties the dishwasher... he tidies... he picks up... he does what he can...
But mostly, what he does, is reach into the depths of his soul to make a connection with me, to let me know he is still that man, who loves me, cherishes me, and wants me by his side. And at night, when we are snuggled in, each reading, and there is just the quiet glow of the light from our bed, enough light to read by... I know to the depths of my soul (and I tell him every morning, and every night), I asked to be shown the blessing and the grace in each moment of this journey. And what I know is, EVEN WHEN it's hard... I wouldn't be anywhere else, and I am grateful to be the one to take his hand and walk through this valley of the shadow with him.
That doesn't mean that there won't be days... or longer... that I walk through my OWN valley of the shadow, when I will feel weak and scared and lost... but I don't feel like my piece in this is MORE diffiult than his! It's different. When we married, we were 50-somethings, and certainly knew a whole lot more of what better and worse could entail, as well as sickness and in health.... it's part of the package!
I know, from watching my sister, that there are times that make you soul weary when you are a caregiver.... but she never EVER gave up. And while she hated the disease, she certainly loved the man, and she went through harder times than I can imagine.... I hope through it all, I can always keep finding the blessing and the grace. I suspect as long as I am willing to seek it out, I will.
Wednesday, February 26, 2014
At home
Coming home was pure joy. We were sad to leave our people behind, the wonderful resident teams, our lovely, loving nurses, but there's truly no place like home, and in our case, home is where the cats are! Thanks to the incredible Kelsey Collins, cat sitter extraordinaire, all was extremely well.
After about 10 minutes, I realized that, while Kevin was home, he was definitely having adjustment issues. An extreme introvert, he isn't forthcoming about his feelings most days ( which makes it all the more precious when he does). My point of context was..myself. When I am ill, or post surgery, I pretty much take over the room. Whether it's excruciating pain or the slightest discomfort, or just ennui, I consider it a public service announcement to verbally assess my situation. Consequently, this completely inward with the tiniest touch of grouchy makes me extremely nervous. I sat beside him, "honey, are you thinking of leaving me?" ( of course not!) (well, I guess practically speaking, that wasn't an option!). The next day, I asked him if he was considering suicide. (He was NOT). I told him he didn't seem happy. (No, he was not). This was very hard, to watch this amazing person go so deeply into himself. I called my sister, who was caregiver to her husband who battled ALS for 9 years. She was wonderful, and didn't tell me how crazy I was being. It was a hard first week, but under my sisters guidance I learned not to jump in to help, or try to fix things until he asked. I stopped ( for the most part) making it about me. We aren't big Valentine's day people but always exchanged cards. I couldn't do hallmark, that felt too inadequate, so I wrote in his journal that I had made him. He totally surprised me with a card from him and one from the girls.(!)
Both his card and the message he wrote told me everything I needed to know, and it was like a damn burst and all of my pent up emotions gushed out. It was a huge turning point for us, and put us back on track. Shortly after that we had our first evening out with friends, and I saw my husband animated, and laughing. We have much of our normal routine and closeness. He still has times when he goes deep within,or gets frustrated with his limitations, but I no longer fear he is planning to do away with himself, or me. ( note: I didn't truly deeply think either of those things, but thought it best to check! I am sure we will have more than a few challenges ahead, but I am confident of a happy outcome. I thank God for FAMILY and FRIENDS who have given us such love and support! And food...and wine! I especially thank my friends who give me wine!
After about 10 minutes, I realized that, while Kevin was home, he was definitely having adjustment issues. An extreme introvert, he isn't forthcoming about his feelings most days ( which makes it all the more precious when he does). My point of context was..myself. When I am ill, or post surgery, I pretty much take over the room. Whether it's excruciating pain or the slightest discomfort, or just ennui, I consider it a public service announcement to verbally assess my situation. Consequently, this completely inward with the tiniest touch of grouchy makes me extremely nervous. I sat beside him, "honey, are you thinking of leaving me?" ( of course not!) (well, I guess practically speaking, that wasn't an option!). The next day, I asked him if he was considering suicide. (He was NOT). I told him he didn't seem happy. (No, he was not). This was very hard, to watch this amazing person go so deeply into himself. I called my sister, who was caregiver to her husband who battled ALS for 9 years. She was wonderful, and didn't tell me how crazy I was being. It was a hard first week, but under my sisters guidance I learned not to jump in to help, or try to fix things until he asked. I stopped ( for the most part) making it about me. We aren't big Valentine's day people but always exchanged cards. I couldn't do hallmark, that felt too inadequate, so I wrote in his journal that I had made him. He totally surprised me with a card from him and one from the girls.(!)
Both his card and the message he wrote told me everything I needed to know, and it was like a damn burst and all of my pent up emotions gushed out. It was a huge turning point for us, and put us back on track. Shortly after that we had our first evening out with friends, and I saw my husband animated, and laughing. We have much of our normal routine and closeness. He still has times when he goes deep within,or gets frustrated with his limitations, but I no longer fear he is planning to do away with himself, or me. ( note: I didn't truly deeply think either of those things, but thought it best to check! I am sure we will have more than a few challenges ahead, but I am confident of a happy outcome. I thank God for FAMILY and FRIENDS who have given us such love and support! And food...and wine! I especially thank my friends who give me wine!
Dark night of the ...eye
We were excited to go back to Ann Arbor for Kevin's first follow-up with the facial nerve surgeon, he seemed to be going well overall, and it was a chance to make sure we were doing okay with wound care. Got to see one of the residents on our team (who was still miffed that Tiffany was our favorite!) . Dr. Kim said it was time to put a sliver of platinum under his left eyelid, to assist in closing , as there was some residual life in the facial nerve, but it would weaken, and it takes 6 months to a year for the transplanted nerve to kick in. 12 shots of lidocaine later, and what seemed like 100 stitches, we were sent away to return in 2 weeks to see both surgeons. AFTER discussing the fact that we had a 4 hour drive ahead of us. There were no written instructions given, other than, any concerns, page the resident. (This was a Friday). About an hour into the drive, Kevin became restless and extremely quiet. Then he started getting testy, leading to surley. Two hours in, I seriously did NOT recognize this person. It's not that Kevin doesn't ever get cranky, but this was, "throw Kevin from the car" and drive away fast cranky.
When we finally pulled into the driveway, and I turned to say something wicked horrid to him, I realized his left eye was almost swollen shut and purple, and gushing tears and blood,and he finally said he was in excruciating pain. I got him inside, afraid he was going into shock as he was chilled and shaky. I paged the resident who was helpful; the fact was, he had been given no pain meds for when the Lidocaine wore off, being in that much pain would make it harder, so he suggested cutting the time between doses in half until the pain was under control. 6 hours later wasn't 't much better,and 6 hours after that, his eye was still gushing tears with blood in them and pain control still not optimal. Hardest thing EVER.
Later that morning, our friend, Lester Hans, came over to replace our thermostat as our original one had gone rogue, and was self- adjusting without consulting us. I had taken Kevin to buy a new one, but he couldn't replace it one handed. God bless Lester, who saved the day! I thought he described Kevin perfectly when he told his wife Patty that Kevin's face looked like it had been bitch - slapped with a shovel. He didn't start to feel okay until the following week. Note to self, never travel to Ann Arbor sans pain meds!
When we finally pulled into the driveway, and I turned to say something wicked horrid to him, I realized his left eye was almost swollen shut and purple, and gushing tears and blood,and he finally said he was in excruciating pain. I got him inside, afraid he was going into shock as he was chilled and shaky. I paged the resident who was helpful; the fact was, he had been given no pain meds for when the Lidocaine wore off, being in that much pain would make it harder, so he suggested cutting the time between doses in half until the pain was under control. 6 hours later wasn't 't much better,and 6 hours after that, his eye was still gushing tears with blood in them and pain control still not optimal. Hardest thing EVER.
Later that morning, our friend, Lester Hans, came over to replace our thermostat as our original one had gone rogue, and was self- adjusting without consulting us. I had taken Kevin to buy a new one, but he couldn't replace it one handed. God bless Lester, who saved the day! I thought he described Kevin perfectly when he told his wife Patty that Kevin's face looked like it had been bitch - slapped with a shovel. He didn't start to feel okay until the following week. Note to self, never travel to Ann Arbor sans pain meds!
Sunday, February 23, 2014
Home
Coming home was wonderful, but presented a few challenges. The first day back, we experienced a snowstorm! So much for the incredible amount of shoveling out our wonderful kitty sitter did. My one armed man ( left arm in splint from surgery done on forearm) was convinced he could do the snow shoveling! I very much thought NOT! I bundled up in his snow gear, and not only shoveled out the driveway and the path to the mailbox, but also Doug through the mound of I've -covered snow surrounding our mailbox.
Ed a polite, portable little number; instead, he shoed up wit
Kevin thought I would love to learn to use the snowblower. I envisioned a polite, portable number, but NO...he showed up with a monster blower bigger than my car! I'll take the shovel!
Ed a polite, portable little number; instead, he shoed up witIn hospital
First post-op day, extremely stressful for Kevin, morphine pump, high level of discomfort. I spent the night in his room so he always had someone to assist him.
Day 2 was much better. They switched out the morphine for OxyContin, and he started has to tolerate small amounts of liquid, and small amounts of soft food.
It has been confirmed that Kevin will definitely undergo radiation; Depending upon the pathology results, he may also get chemotherapy as well. There is a clinical study that is hoped will be available in South Bend. Once again, his case is being presented at tumor board.
In addition to 2 nurses and a physical therapist, we have 3 teams of residents, and 3 attending physicians making rounds throughout each day. The nurses are involving me in all aspects of his care, including bathing him. I can't say enough about the care he is getting, and how generous everyone is in their concern for me as well. The nurses brought a recliner into the room so I could stay there comfortably, and have brought me heated blankets in the night.
Everyone is pleased at how quickly he is progressing, especially me! We have done walk around the Unit (with him using a walker, and me pushing the IV pole) with another scheduled walk .
Our days were extremely busy with a myriad of tasks Kevin needs assistance with. The care is great, love the entire team, and the regularity with which the nurses are here. My cell coverage is spotty in our room, so I don't have a lot of communication with the outside world, but at the same time, my focus is on giving Kevin the assistance and attention he needs.
Kevin was discharged on day 6 ...soooo happy to go home!
Experiencing the throne of Grace
Once we shared the news about Kevin's surgery, we were surrounded by love, support and prayer throughout the country; my sister alone recruited 37 faithful to pray for us. I knew we were well supported, but what I experienced throughout the day of surgery can only be described as a Divine Mystical. Throughout the day, I received many loving telephone calls, texts, emails and Facebook messages. Clearly, there was a community of faith surrounding me.
As the surgical finish line continued to be pushed back, the love, support and prayer network became stronger and there were more and more people joining in. However, when I announced on Facebook that we were looking at midnight, there was a veritable explosion! 9 states, and too many prayers to count! My sister and her group were going strong, one after another friend reported I that their home group was now praying for us; another had their evening church prayer service dedicated to us, a yoga group had set the intention of love and healing for us, texts of prayer and healing love and support coming in fast and furious, emails... There was so much healing love and light that I leaned back, shut my eyes and was filled with the vision of a dark night sky with stars exploding onto the canvas, filling the sky, one after another, and I FELT, rather than heard, a voice saying, each of these stars is a prayer...I couldn't speak, I had no words, I could only be still, and know, that I was standing before the throne of Grace, and I was safe.
At 10:15 Dr. Jennifer Kim strolled out to find us, very very pleased with the surgical outcome. Finally, this piece was behind us, all was well, let the healing begin, and a THANKS BE TO GOD!
Surgery day
This should be entitled "the longest day" as it was slated as an 8 to 10 hour surgery. The thought of being 4 hours from anyone familiar if catastrophe struck was daunting, but my friend Patty Hans surprised me by announcing her plan to come with me! That was a gift beyond anything I could ask.
We arrived at the hospital at 5:30 am. The day started out auspiciously; first when they whisked Kevin and I back to preop, and my phone inside my purse suddenly belted out Mary Chapen Carpenter, "why walk when you can fly"' a song once very special to me. The preop nurse told me that her son was a "graduate" of Dr. Bradford; he'd had the same surgery she was performing on Kevin today. That was 10 years ago, and he is doing well today. The anesthesiology resident arrived wearing a USC surgical cap, alma mater of my friend, Emily's. After I put him through his paces as to exactly how he would keep my COPD husband alive under anesthesia for 8 to 10 hours, and what systems did he have in place if his plan failed. He was a rock star with all good answers, so I told him he could take my husband out to play. I learned he did his undergrad and med school at USC, and had applied to UCI (where I previously worked as an Anesthesiology coordinator) but ended up at U of M.
All too soon, they whisked Kevin off to the OR, leaving me with a light up, vibrating disc that would alert me to come to surgical reception where I would get updates about every 2 hours, mostly consisting of, "everything is proceeding as scheduled." I received those messages at 9:30, 11:30, and then 20 minutes later, I received another alert. This time, the message was, "we 're going to put you in a room so the doctor can talk to you, and if you have someone here with you, you may want to go get them." My heart was in my throat as Patty and I waited for Dr. Bradford ( expecting to tell me Kevin was dead...) She strolled in with a huge smile, telling me the surgery went extremely well, got clean margins, and altho the tumor was wrapped around the facial nerve as suspected, the auditory nerve was clean, and the ear canal was spared. She did lymph node dissection on 35 nodes, and found one suspicious, which, if it turns out malignant would mean adding chemo to the mix. She reassured me that Kevin was "rock solid". I thanked her, she hugged me and back we went.
All was uneventful for the next few hours until I was paged to surgical reception, but they didn't know why, until a crabby faced woman materialized, and in a serious tone suggested I get whoever was there with me, and she would take us to a private room. Once again, Patty and I waited. I started feeling as tho I was nor Patty away from meltdown. This time, Dr. El Kashlan came in with a huge smile, very happy that the auditory nerve was clean, and explained that he did have to clean out tumor from the mandible, which was why Kevin would be receiving radiology. He said he had a bit more to do, and then Dr. Kim would come in to remove nerve, fat and tissue from his forearm, and reconstruct his facial nerve and fill in his face with fat and tissue and create a flap over all, and her part would take 4 to 6 hours. He projected her end time to be 5:15.
Just when we thought the end was near...the pages started coming.
Dr. Kim thinks she will finish at 7:15...
Dr. Kim thinks she will finish by 9:15...
And when we got to, Dr. Kim thinks she will be finished by 12:15 (am)...I started to lose it, in spite of the fact that the O.R. Nurse and the O.R. Tech were reassuring me that Kevin was fine and holding steady
We arrived at the hospital at 5:30 am. The day started out auspiciously; first when they whisked Kevin and I back to preop, and my phone inside my purse suddenly belted out Mary Chapen Carpenter, "why walk when you can fly"' a song once very special to me. The preop nurse told me that her son was a "graduate" of Dr. Bradford; he'd had the same surgery she was performing on Kevin today. That was 10 years ago, and he is doing well today. The anesthesiology resident arrived wearing a USC surgical cap, alma mater of my friend, Emily's. After I put him through his paces as to exactly how he would keep my COPD husband alive under anesthesia for 8 to 10 hours, and what systems did he have in place if his plan failed. He was a rock star with all good answers, so I told him he could take my husband out to play. I learned he did his undergrad and med school at USC, and had applied to UCI (where I previously worked as an Anesthesiology coordinator) but ended up at U of M.
All too soon, they whisked Kevin off to the OR, leaving me with a light up, vibrating disc that would alert me to come to surgical reception where I would get updates about every 2 hours, mostly consisting of, "everything is proceeding as scheduled." I received those messages at 9:30, 11:30, and then 20 minutes later, I received another alert. This time, the message was, "we 're going to put you in a room so the doctor can talk to you, and if you have someone here with you, you may want to go get them." My heart was in my throat as Patty and I waited for Dr. Bradford ( expecting to tell me Kevin was dead...) She strolled in with a huge smile, telling me the surgery went extremely well, got clean margins, and altho the tumor was wrapped around the facial nerve as suspected, the auditory nerve was clean, and the ear canal was spared. She did lymph node dissection on 35 nodes, and found one suspicious, which, if it turns out malignant would mean adding chemo to the mix. She reassured me that Kevin was "rock solid". I thanked her, she hugged me and back we went.
All was uneventful for the next few hours until I was paged to surgical reception, but they didn't know why, until a crabby faced woman materialized, and in a serious tone suggested I get whoever was there with me, and she would take us to a private room. Once again, Patty and I waited. I started feeling as tho I was nor Patty away from meltdown. This time, Dr. El Kashlan came in with a huge smile, very happy that the auditory nerve was clean, and explained that he did have to clean out tumor from the mandible, which was why Kevin would be receiving radiology. He said he had a bit more to do, and then Dr. Kim would come in to remove nerve, fat and tissue from his forearm, and reconstruct his facial nerve and fill in his face with fat and tissue and create a flap over all, and her part would take 4 to 6 hours. He projected her end time to be 5:15.
Just when we thought the end was near...the pages started coming.
Dr. Kim thinks she will finish at 7:15...
Dr. Kim thinks she will finish by 9:15...
And when we got to, Dr. Kim thinks she will be finished by 12:15 (am)...I started to lose it, in spite of the fact that the O.R. Nurse and the O.R. Tech were reassuring me that Kevin was fine and holding steady
Saturday, February 22, 2014
How it all began
In July, Kevin was treated for a salivary gland infection. A course of antibiotics diminished the swelling dramatically, and even tho there was residual swelling, it was no longer painful, and was expected to continue to diminish.
Two months later, a member of my book group privately shared part of her story about her cancer experience, beginning with her dentist, who was the first to discover a lump in the roof of her mouth. It was Kevin's dentist who was concerned about the residual swelling, which sent us back to our family doctor. She immediately went into action, referring us,and magically blowing open the doors to, a local ENT. Following came a CT which was not suspicious for malignancy. After another course of antibiotics, and residual swelling, he sent Kevin to his partner for an endoscopy. A fine needle biopsy revealed the presence of undifferentiated malignant cells. In December, Kevin underwent a partial parotidectomy. Frozen section was positive. We were referred immediately to the University oh Michigan to the Chair of otolaryngology, and national expert on parotid cancer surgery.
Our first visit entailed visits to 3 separate surgeons, and two MRI's. Dr. Carol Bradford for the Parotid, Dr. Jennifer Kim to reconstruct the facial nerve by taking nerve from Kevin's forearm, and Dr. El-Kashan on standby to remove tumor from the mandible, and possible removal of the ear canal. In short, this irritation of an infection had snowballed.
On our trip home, we ended up at Win Schulers resturant in Marshall, Michigan. Interestingly, when Kevin and I had our first date at age 19, it was at Win Schulers in Stepensville, Mi. In spite of years of neglect, and many iterations, This Win Schulers had been restored to former glory, and for a moment, we were 19 again with our lives ahead of us!
It was bittersweet, because while we did not know the scope and shape, we knew we were in for a different journey than we could have ever imagined.
Two months later, a member of my book group privately shared part of her story about her cancer experience, beginning with her dentist, who was the first to discover a lump in the roof of her mouth. It was Kevin's dentist who was concerned about the residual swelling, which sent us back to our family doctor. She immediately went into action, referring us,and magically blowing open the doors to, a local ENT. Following came a CT which was not suspicious for malignancy. After another course of antibiotics, and residual swelling, he sent Kevin to his partner for an endoscopy. A fine needle biopsy revealed the presence of undifferentiated malignant cells. In December, Kevin underwent a partial parotidectomy. Frozen section was positive. We were referred immediately to the University oh Michigan to the Chair of otolaryngology, and national expert on parotid cancer surgery.
Our first visit entailed visits to 3 separate surgeons, and two MRI's. Dr. Carol Bradford for the Parotid, Dr. Jennifer Kim to reconstruct the facial nerve by taking nerve from Kevin's forearm, and Dr. El-Kashan on standby to remove tumor from the mandible, and possible removal of the ear canal. In short, this irritation of an infection had snowballed.
On our trip home, we ended up at Win Schulers resturant in Marshall, Michigan. Interestingly, when Kevin and I had our first date at age 19, it was at Win Schulers in Stepensville, Mi. In spite of years of neglect, and many iterations, This Win Schulers had been restored to former glory, and for a moment, we were 19 again with our lives ahead of us!
It was bittersweet, because while we did not know the scope and shape, we knew we were in for a different journey than we could have ever imagined.
Subscribe to:
Posts (Atom)