And the Results Are In….

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IMG_7929“Unremarkable.”

Normally, I’d take offense to being called unremarkable, but in the world of cancer diagnosis, that is the exact description that you are hoping for.

I had my first post-surgery CT Scan last week Wednesday and had to wait until July 6th to get the results. The scan, which included my abdomen and chest, show no signs of cancer.  My bloodwork was also A-OK!

My Medical Team is very pleased with my progress. I’ve healed very well and I’m enjoying a normal diet eating smaller portions 5-6 times a day. (The only thing that I have had to stop eating is bread – which is a bit of a disappointment since I use it pretty much as a placeholder for jam – but it’s one minor concession that I am happy to make.)

I did lose a lot of weight through the procedure and recovery but I’m consistently maintaining my new weight. I have started working out again to gain the muscle mass I lost. I’m back to lifting weights and doing cardio work. Lee and I plan on running The Color Run in October. (We missed it last fall for obvious reasons.) Overall, I’m very pleased to be 99% recovered from surgery.

IMG_7948Lee and I were talking recently and the one thing, above all else, that we have learned through all of this is that you cannot take anything for granted. Not time, not friends, not family, not experiences. We are not putting anything on hold anymore. We’re traveling, visiting friends and family, hiking, camping, loading up on all the experiences life has to offer. What we’ve learned is that you just never know what the future holds and all we have is this one present moment to live, to love and to laugh.

IMG_7954We want to thank all of you – our friends, our family, our support network, our prayer warriors, my gifted doctors and surgeons – for everything that you have done for us over the past many months. With all of you and God watching over us, we are truly blessed to have come through this in “unremarkable” fashion. Updates will be fewer and farther between from this point forward. My next oncology check-in will be October 3.

Please feel free to reach out via phone, text, email whatever means you chose.  Thank you again for all you have done for us and God bless all of you…

 

Love,

Mark & Lee

Update #13: Hello…it’s ME!

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img_6943-1It’s been a while since our last update and a lot has gone on since then. The return trip to the hospital lasted another four days (totaling 17 days in the hospital). The good news, we got everything straightened out with meds and the feeding tube. I have now been home since March 1.

When I left the hospital (again), I was still attached to a feeding tube that runs 24/7. The tube slowly pushes water and a high calorie formula to keep me fed and hydrated. I was also released with a  chest tube to drain any fluid from my chest cavity. The chest tube was kind of a pain because attached to the tube was about 4 feet of rubber hose, connected to the drain box that went everywhere with me – kind of like Flavor Flavs Time Piece – but without all the pretty. The down side is that I could only sleep on my back with my head/torso at a 20 degree angle. But it was good to be home and in my own bed.

On Monday, March 13, I had an esophogram to check the status of the leak. For the most part, the leak had healed, but there was a small residual pooling that they wanted to keep an eye on, so I began “The Grape Juice Test”, laughingly called the poor mans contrast study. For a week, I sipped purple grape juice throughout the day to see if any showed up in the chest tube drain. We didn’t see any and the flow from the chest tube slowed to a half teaspoon a day.

Yesterday, March 21, I had my first follow-up with Dr. Varghese at Huntsman Cancer Institute. He was very pleased with my progress, and with the lack of grape juice in the chest drain. Because of that, thank God, the chest tube was finally removed! Yippee! On top of that, I am being allowed to have real food. OK, real SOFT food, but food none-the-less! (I had only been allowed small sips or water and ice chips up to this point.) After 36 days, I was able to eat yogurt. It was the best vanilla yogurt ever! I was only able to eat about four spoonfuls before feeling full – the byproduct of having my stomach converted into my new esophagus. It’ll take a while to get my stomach to the point where I can eat more, so the feeding tube and I will still be together.

Today I head to an appointment with Dr. Robert Glasgow, my other surgeon, and we’ll see what he has to say. That’s the latest and greatest. Thanks again so very much for all the thoughts and prayers! It means the world to Lee and I.

Love,

Mark

Update #12: Out of the Hospital & Back in 14 Hours

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img_3200Saturday, 13 days after his surgery, Mark was released from Huntsman Cancer Institute and we headed for home. We were equipped with food and meds to feed him through his feeding tube. The bolus (syringe feed) went very well. He slept in his own bed for the first time in 13 days. But he was restless and at 5am Sunday he went downstairs. At 7:15 he told me he was having trouble breathing and his heart was in A-Fib again in spite of the meds he was on. At 7:45, although only out of the hospital for 14 hours, we headed to the ER and he was later readmitted to Huntsman.

Apparently there had been a behind the scenes discussion as to whether to use an automatic dispensed feed that Mark had been hooked up to for the past 13 days, or a bolus feed. We were to use the bolus for food and meds.

Since Mark had been on some pretty heavy opiate pain meds, the oxy elixir had made him constipated. Due to that, the food and meds we administered through his feeding tube filled up his stomach and flowed out of the current leak. The shortness of breath and the A-Fib were the result of fluids once again flowing into his chest.

All that being said, Mark’s doing really well. He is no longer on the oxy elixir for pain and he feels really good. He’s clear headed and says he really has no pain that ibuprofen won’t take care of. His heart is back in rhythm (with meds), he’s up walking and climbing stairs with the Physical Therapists.

That’s the story of Mark’s Out of the Hospital & Back in 14 Hours experience. Sorry to not have updated sooner, it’s been like Mr. Toad’s Wild Ride around here. As soon as we have more info on his re-release, we’ll let everybody know.

Thank you for all your support. And a special shout out to Tyler Quinn, my hero, who shoveled the deck when it was over my knees and I couldn’t physically do it. He’s a sweetie!

Love,

Mark & Lee

 

 

 

Update #11: And Then He Sprung A Leak…

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Yesterday Mark had his contrast study done. While swallowing contrast dye a radiologic video is recorded. I was able to watch the computer screen while he was taking the test. Looking at where the contrast went was interesting. Something looked weird to me – I could see the contrast in two places – but what do I know. When I asked the radiologist “all good?”, she said, “he has a leak.” Since he has sprung a leak here’s where Mark is in his healing….

Dr. Varghese came to the room after seeing the results of the test. He said this happens in about 4% of these surgeries. (Lucky Mark!) He explained that it is a wait and monitor the leak situation. I asked if it was similar to a small plumbing leak that would sometimes self-seal. He laughed and said great analogy….yes. 

Dr. Varghese said he wanted Mark to have a CT scan to determine whether the 2 current chest tubes that are draining the serous fluid from the surgery wounds are also draining the pocket of fluid the leak has caused. The CT scan showed that the 2 current tubes don’t cover the area of leakage. Dr. Glasgow and Dr. Varghese are discussing with the radiology team when or if an additional drain needs to be put in. We should know that later today.

Additionally, Mark’s epidural and self-push pain button have been removed. They’ve replaced those pain meds with something else, so he’s comfortable. He’s still on heart meds due to the A-fib as a result of the surgery – the heart gets pissed when jostled – and they’ve added antibiotics to help avoid any issues caused by the leak.

We should know later today what the decision is on the drain. Best case scenerio he may go home Friday or Saturday. Otherwise he’ll go home sometime next week. Mark’s taken two steps up and one small step back, but he’s progressing well.

Thank you all so much for the love and support. 

Love, 

Mark & Lee

Update #10: Recuperating on Presidents Day

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The past several days have been rest, rest and more rest. Mark is currently on his way to radiology, celebrating Presidents Day with a contrast study to check all the his new connections to assure no issues or leaks. (They aren’t anticipating any.)

Mark has two chest tubes. When I asked what they were for exactly, it was explained that the surgeries are similar to a wound that weeps. The tubes collect any serous fluid and drains it out of the body. With any luck one or both will be coming out tomorrow since one of them is causing a good deal of pain. His epidural will more than likely be removed tomorrow as well. Each day he gets a bit stronger, his assisted walks are a bit longer, and he is needs less pain meds.

Fingers crossed and doctors willing we’re hoping he’ll be able to go home in the next few days.

Thank you again for all your prayers, comments, texts, emails, calls, letters, gifts, love and support. We couldn’t have asked for any better people to be with us during Marks diagnosis and surgery. We are also very thankful for all the caring, profoundly talented doctors, nursing staff, anesthesiologists, physical therapists, and people at Huntsman Cancer Institue. They have been nothing short of fabulous. 

Love,

Mark & Lee

Update #9: Out of ICU!

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Late yesterday afternoon Mark was transferred out of ICU and on to the regular surgical floor. YAY! I have to say, though, I have never experienced a more devoted, attentive, caring and compassionate staff that cared for Mark in the ICU. They have been fabulous.

Yesterday Mark went for a bit longer assisted walk in the afternoon, and then again at 11:30pm. The walks are predicated on the availability of the PT staff and they are swamped. 

Mark is doing really well. He’s been working on expanding his lungs with deeper breaths. It is uncomfortable but he’s making great progress. He looks great, has good color, his incisions are healing well, and there’s a rumor he may be able to start drinking and eating very soft foods soon. The Doc just stopped in and it looks like he’ll be getting some ice ships later! (All the poor guy wants is a drink of water…)

Thank you for the thoughtful gifts you send for Mark. He now has a roommate to keep him company. This little guy showed up at the house the day before yesterday. He celebrates the 50th anniversary of Star Trek – notice his resemblance to Mr. Spock – and represents in his Green and White.

Thank you again to everybody for your continued prayers, good wishes, calls, texts, emails, messages and comments. I share them all with Mark.

Love,

Mark & Lee

Update #8:  Still in ICU

Good morning and updating from the ICU at Huntsman Cancer Institute. 

Not yet at 72 hours, I, and the rest of the staff, think Mark’s doing really well. We’re still in the ICU because his heart rate was doing some funky things yesterday. It was jumping everywhere and too high. Apparently this is common after this type of surgery since the heart gets pissed off at being jostled. He was given medication to help this and today his heart rate is much better.

The PT folks got him out of bed yesterday for an assisted, very short walk. At this point it’s like running a marathon, but he finished! His vent tube was taken out several days ago, and hopefully the tube in his nose will come out later today. He’s being fed through his temporary feeding tube – I think is something similar chocolate ensure. Although he can’t taste it he says he can smell it.

The PT folks will be in and out today and he’ll be walking with them 3 times. Mark is heavily sedated for pain and still has the epidural mid back to deal with the pain from the 2nd incision that’s between his ribs.

There’s the potential that Mark will be moved to the regular surgical floor today depending on his breathing and heart rate.   He still has lots of tubes, wires and meds, but they’ll go one by one as his recovery progresses. All he wants is a drink of water, but he has to have the swallowed dye test first (not sure when that is) to make sure there are no leaks.

We cannot say thank you enough for all the outpouring of help and support. We appreciate each and every one of you. Little Oscar…well he’s being taken care of by our wonderful friends at Pinebrook Animal Hospital. He even has a new little buddy  about his size!​
​Thank you all so much!

Love,

Lee & Mark

Update #7: Game Day – Surgery

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Game Day started yesterday at 4:30 to get Mark to his 6 am check-in for his surgery at the University ofi Utah Hospital.

img_6949-6After a parade of doctors, anesthesiologists, residents and nurses came to speak to us, he was wheeled off for an epidural, and his surgery began at 9:00.

Marks surgery went very well and he’ll be recovering in the hospital for 7-10 days. His first two days he will be in ICU at Huntsman Cancer Institute and then will be transferred to Huntsman’s regular care floor. He has been intubated since surgery and has had meds to keep him very sedated. The breathing tube is supposed to come out this morning.

We are extremely grateful for the surgical skills of Dr. Robert Glasgow and Dr. Thomas Varghese  and their teams. We owe Mark’s life and health to them and the many, many other phenomenal physicians and staff  who have touched our lives in the past 5 months.

We are also thankful to all of you who have been with us through Mark’s journey for all the support, help, cards, calls, prayers, texts and well wishes. It has meant the world to the both of us.

I’ll keep you posted on his progress this week. Please continue to keep him in your thoughts and prayers.

Love,

Lee

Update #6

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Celebrating My Birthday & Counting Down to Surgery (A Video Update!)

The folks at Huntsman Cancer Institute have been incredible. Finishing Dr. John Weis‘ chemotherapy and Dr. Randa Tao’s radiation therapy in December, I’m now in the hands of surgeon Dr. Robert Glasgow. Looking forward to getting through surgery, recovery and getting back on the road to being healthy!

Thank you again for all your prayers, calls, cards, texts, emails and good thoughts.

Love,

Mark

Welcome to Half-Time

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fullsizeoutput_1b11
fullsizeoutput_1b0aOn Monday, December 19, I completed my 28th and Final Radiation Treatment…  YAY!  I am thankful that this phase is over and that we can relax and enjoy the holidays.

While the radiation treatments were not as debilitating as the chemo, it still wore (and continues to wear) on me physically.  I hope the fatigue will start to dissipate and I can get back to an adult bedtime as opposed to the 3rd grader’s bedtime of about 8:30pm.

dsc_0044According to Dr. Tao, my Radiation Oncologist, I was a perfect patient as I was able (with Lee’s persistence) to maintain my weight and keep my skin in good condition. The cancer being radiated can only be reached through the skin. That skin can be very damaged unless you don’t take particular care of it. In using the product Dr. Tao and her staff suggested, my skin looks great and feels pretty good.

Having completed six weeks of treatment, this part of the journey and seems a bit surreal. What started 10 plus weeks ago with a lot of unknowns and questions, and a flurry of treatment activity, now becomes “Half Time” of the process. This is the time I have to relax, decompress and – most importantly – heal.

fullsizeoutput_1b0fI asked Dr. Weis why there was a delay between treatment and surgery. He said that the radiation and chemo are rather destructive to the organs in the radiation field. That the tissues in the field would not have the strength to hold up to that much trauma.

dsc_0036I am grateful for the care that I received from both Dr. Tao‘s Radiation Oncology team and Dr. Weis‘s Medical Oncology team. I believe that I feel as well as I do thanks to their diligence in laying out a successful treatment plan.

In mid-January I’ll have another PET Scan followed by a Surgical consult with Dr Glasgow, with my surgery sometime in February.

fullsizeoutput_1ac1I’d be lying if I said I wasn’t nervous, but I continue to count my blessings. I truly appreciate all the kind thoughts, prayers, phone calls, cards, emails and messages! They brighten my day, give me strength and help me through this battle.  I know that part of my first-half success comes from the love and support of all my friends and family and I will never be able to thank all of you enough.

You’ll see another update in a few weeks once the next steps are scheduled. In the meantime, please have a Merry Christmas, a Happy Hanukkah and a Blessed and Prosperous New Year!

Love,

Mark

PS – the heart in the snow was something somebody did in the courtyard for all the patients to see. Cool, huh?