I’m finally home from the hospital! I know I’ve said that before and then had to turn around and go right back in, but this time I’m determined to make it stick.

Just to recap, I was inpatient for three weeks total. The first two weeks were to start the immunosuppressant drug for the colitis caused by my cancer treatments. The immunosuppressant took longer than expected to start working. (I am a procrastinator in all senses of the word, I guess.) Luckily, we did start to see results, and they sent me home on a Friday night about 10 days ago.

Word of advice: if you’re going to be discharged from a hospital, don’t go home on a Friday night. It is so much harder to get in touch with your doctors or get new prescriptions over the weekend. Poor Michael (that’s what we call him now; so many people said it so often that it just became part of his name) … Poor Michael was on the phone all weekend trying to get all the supplies and new prescriptions I needed.

While I was home that weekend, I was having a lot of side effects from the immunosuppressant. Not surprising. It does suppress your immune system after all. The worst was that the drug was burning my esophagus, and it was so painful that I couldn’t eat or drink by mouth. I have a high tolerance for pain, but this was capital-P Painful. I got very dehydrated. Monday, Michael took me to the doctor, and he admitted me again.

Since we did not expect me to be admitted again, we had not warned Mara, and I had not gotten to say a proper goodbye before leaving her with my parents. So, I spent the next hour crying and pouting and sulking and acting like a real baby. Michael let me vent. Parents of toddlers know that sometimes you just have to watch as they cry and pound on the floor. Eventually, I calmed down and realized that I was only a few exam rooms down from where I first got my cancer diagnosis on February 25, 2016. That put things in perspective. (Incidentally, Mara handled the news about my admission fine.)

We did not know how long I’d be in the hospital the second time (the estimate was “a night or two” - I was there a full week), and we had not prepared for another hospital stay, so Michael had to run home and pack a bag for me. Michael and I have never been one of those couples who packs for each other before vacations, but he did a surprisingly good job. Sure, he brought 6 t-shirts and only 3 pairs of pajama pants. Fine, he forgot my slippers. Yes, all my toiletries were in weird spots and hard to find. That’s ok. The only real issue was that he forgot to bring me a hairbrush, so after a full week in the hospital without a hairbrush, believe me when I tell you that I looked like every Winona Ryder mugshot.

One tiny(?) hiccup during my hospital stay - I was seeing a doctor on my GI team nearly everyday, and last Tuesday he performed two endoscopy procedures on me. And then, the next day, he tested positive for COVID! Fantastic! So after all my family has done to protect me from COVID this entire year, I’m the only one who has actually gotten exposed. (Actually, Michael was briefly in the room with the doctor too, but only for a couple minutes.) Michael’s first thought when he heard I was exposed was, “What an f-ing mess! You’re immunocompromised, mute, and now I can’t be at the hospital with you.” My first thought was, “Damn! I could have gone to the beach this summer after all!” I mean, if I was going to get exposed anyway, I might as well have seen the ocean, right? Although I don’t discount the severity of COVID, I’m not that worried about this exposure. The doctor had an N95 mask on every time I saw him. I haven’t had any symptoms. His wife hasn’t even gotten it (although now that I think about it, that’s going to be hard to explain if I do get it from him). I’ve had two negative tests since my exposure and this Friday will be 10 days without symptoms. After that, I will get to hug my parents again!

The hospital stay should have been shorter, but the immunosuppressant kept causing other weird side effects. I started getting migraines and tremors. My hemoglobin plummeted. Stuff like that. Each one needed a workup and treatment. I got an iron infusion. I had MRIs of my head and spine (normal except for some degeneration from age. Um, what? I’m a millennial!).

I’m fairly convinced that making a person who has a migraine get an MRI is illegal under the terms of the Geneva Convention. If not, we should definitely start using it as torture at Guantanimo. If you haven’t had one, MRIs are insanely loud. They sound like someone made a mix-tape of just construction site noises and the screeching sound dial-up internet used to make. The first scan takes up to an hour. Then, they pump you full of contrast, which I imagine is sort of like tie dye for your insides, and they do the same scan again, except this time it only takes five minutes for some reason they never explain.

It takes about a hundred years to get the MRI report. When you get the MRI report, it will have a bunch of absolute jibberish sentences (“the enteoterioic hibiscus saline routes are parallel to the neurobiliac sac”) that you won’t be able to decipher even when you Google them, but, mixed in with those will be a bunch of basic statements like “Lungs are present.” These always catch me off guard. Like, was that a concern?

On Monday morning, I had been in the hospital a full week, and I was DONE. I hadn’t slept for more than two hours at a time. My body was covered in bruises from getting shots all week.

I texted my family: “I don’t care if the MRI shows a tiny alpine hiker rappelling down my spine. I am not staying in this hospital another night.”

Luckily, the MRI results were fine, and I was allowed to go home! I still have to be on tube feeds to get extra nutrition because it is still hard to swallow, and I still have a tremor. Michael keeps taking videos of it. He says they’re to show the neurologist, but I’m skeptical.

?It is wonderful being home with Mara and Michael. They have always been close, but I love watching the little rhythms they’ve developed while I’ve been gone. Mara’s desk is next to Michael’s desk, and she does her virtual learning next to him while he works. It is very cute. She doesn’t love the virtual learning, but she does love all the Facetime with our family. They’ve called to read, play, teach, and cook with her. It has been wonderful. She also loves all the food everyone has sent, and it has been such a relief to Michael to not have to worry about getting groceries or cooking. Thank you to everyone. I mean it when I say we could not do this without all of you.

One last thing I wanted to mention. I have had the most amazing nurses over the past four years. Out of the hundreds of nurses I’ve had assigned to me, there were only 3 that I didn’t think were great. I know there are a lot of people thanking Essential Workers and First Responders during COVID, but I just want to say that I witnessed first-hand how much extra work COVID is making for hospital staff - even with patients who don’t have the virus. Everyone, from maintenance to transport to nurses, has to take time to change gear constantly, put on extra gowns, take extra temperature readings, wipe down things more than usual. These are 12 hour jobs that were already chock full to begin with. If you know anyone in a hospital setting, even if they haven’t treated COVID patients directly, please thank them for all the time sacrifices they’ve been making to keep patients like me safe.

Oh, I lied. This is the last thing I want to mention. When I got cancer, a lot of people wrote to me to tell me about their cancer journeys. I never knew they were sick. When my cancer treatment caused colitis, a lot of friends messaged me to tell me they also have colitis or Crohn’s. I never knew they were sick. I am very open (probably too open) about my medical issues. Some of that is because I think it is good for people to know what is going on, and sometimes it is just easier because I can put all the information in one place and I don’t have to remember who I gave the details to. I get so much support and prayers from all of you because I’ve been so vocal (pun intended) about cancer. This time, I’d like to ask that you pray instead for someone who is sick but does not talk about it. They need the love and support. If you hear of a friend getting a diagnosis, even if they don’t complain or explain or joke or update like I do, they are still having a difficult time. If there’s anything you were thinking of offering me, please do it for them instead. That would make me so happy. You’re the best group of people, and I want to share you.

Hi Family and Friends,

It has been quite a while since I gave everyone an update. I want to just say right off the bat at the top of the update that my cancer is not back, so no need to worry about that! I know it is probably nerve-wracking to see a new update from me. Just a quick re-cap: from the end of 2018 to April of 2020, I got infusions of the immunotherapy drug pembrolizumab every three weeks, and it has kept away any new tumors or growth of old tumors. It has truly been a life-saving drug. I’ve had CT scans every three months, including this past Monday, and the results have been great. Naturally, we get nervous before getting the results every time, but so far, my cancer has stayed away. So that’s the great news.

The crummier news is that this spring I developed an auto-immune response to the immunotherapy and had to stop treatment. (Cancer really is the gift that just keeps on giving, amiright?) Basically, my immune system got a little too strong, killed off the cancer, and then decided to attack my gastrointestinal system. It’s kind of like I developed a superpower but am really terrible at using it. I stopped the immunotherapy at the end of April, and so far the cancer has not come back, but the GI issues have persisted. I’ve been on steroids all summer, and those helped for a while, but they’re not working anymore. We’ve tried a bunch of other drugs, and in September I started infusions of Entyvio - an ulcerative colitis drug that has shown promise for treating immunotherapy-induced colitis. It takes a couple months to start working though, and my condition has gotten a bit too severe to wait that long (I’m not going to lie - I feel like garbage), so I am going to be hospitalized for about a week to get an immunosuppressant drug that hopefully will work until the Entyvio kicks in. Most likely, I will be admitted to the hospital on Friday.

Obviously, being inpatient for a week or more isn’t ideal, nor is being on strong immunosuppressants during a pandemic, but we’ve been very isolated so far and will continue to be careful. Michael has been a champion, juggling working from home and taking care of Mara. Our families have already been taking turns spending time with Mara virtually for kindergarten lessons and play time. This has been a huge help and will especially be helpful when I’m in the hospital. Mara is loving all the Facetime sessions with her relatives. My parents will be able to help in person once they get to Chicago and finish a strict two-week quarantine and then remain isolated except for seeing Michael, Mara, and me. All of these are huge sacrifices, and we are so grateful for everyone’s help.

We plan to turn the MealTrain calendar back on starting Friday and will keep it open at least for the week I am in the hospital. Hopefully, things will be better after that. Other than that, we don’t really need anything other than everyone’s continued prayers which have sustained us so far. We love and appreciate you all and look forward to spending time with you once I’m feeling better and the world is normal again!

Update: in which I am happy and sentimental and in the mood to include demonstrative exhibits…

I am so THRILLED to be able to write this update. On Monday, I had a chest CT to see what effect the chemotherapy and immunotherapy treatment has had on the four tumors in my lower lungs. This afternoon, Michael and I met with my oncology team, and they had great news for us!

None of the four tumors show up on the CT scan! They are gone. The medical oncologist said the response to the treatment has been tremendous and better than he hoped it would be.

The change is most striking when you see my pre-treatment scan (with the tumors) next to my most recent scan (tumor free), so I’m including those side-by-side here. I’m not even joking - I love these photos so much, I might frame them!

Image 1:

The October 2018 CT is on the left, and I circled the two uppermost tumors in green. This past Monday’s CT is on the right, and the tumors are gone. (I have no idea what all that other junk in my lungs is. I have a three year old, and we do a lot of art projects, so there’s a very good chance it’s glitter.)

Image 2:

Tumor #3 is on the left-hand image in green. Nothing on the right.

Image 3:

Finally, tumor #4 (the smallest and lowest one) is in the scan on the left circled in green. Again, nothing in that same area on the new scan!

We are just so happy and relieved and grateful that I don’t even know what to say. Tonight will be the first night in a VERY long time when I won’t fall asleep wondering how many days I have left with Mara and Michael. I know that may seem excessively dark, but, sorry - the mind goes to some very dark places after you get diagnosed with Stage 4 metastatic cancer.

I will still need to get immunotherapy every three weeks for the next two years in order to fight any residual cells or nodules too small to be visualized on the scans. I do not need to continue chemotherapy though, so that is a huge relief. I’ll get additional scans every few months to confirm that all is still well. I didn’t ask what the likelihood of another recurrence is because I do not want to devote any energy to worrying about that. I am healthy now and plan to stay that way!

This entire cancer battle, and especially the last four months, has been full of uncertainty, but one thing I know with absolute certainty is that I could never have endured it all without the support of my family and friends.

Mara gave me the best reason to keep fighting, and she taught me resilience in the way she adapted so quickly to every major change. She made me smile when I didn’t feel like smiling. She was a reason to get out of bed when I felt weak. She made me feel loved. She made me feel brave.

Michael has seen me at my best and at my worst, and his love has been unconditional and unwavering. He was there for me during all the ugly moments of cancer that don’t get talked about much. For the last two years, he has been the one propping me up so I didn’t completely fall apart. He is my best friend and my greatest love, and I don’t think cancer knew what it was up against when it decided to try to separate us.

My mother uprooted her entire life (twice!) and moved to Chicago to take care of us. Many days, I was only able to be strong because I saw her being so strong and optimistic. So many people have called me strong while going through treatment, but any strength I have I owe to mom. Strong women raise strong women, after all. My mom’s faith was constant and seeing the strength of her faith was sometimes the only thing that helped me keep mine.

My father managed to balance work and spending time with us during my illness, and he never complained. He also never lost hope, no matter what. No matter what the doctors were telling us to expect, he immediately would say, “It’s going to be fine.” Now, mind you, he is not a doctor, so he had no reason to be so confident, but his certainty in the outcome was so absolute that, if he had ever expressed any doubt about my recovery, I think the rest of us would have completely fallen apart. His optimism was the canary in our coal mine.

My siblings and their spouses kept me feeling normal. They are all amazing lip-readers. So much so that I sometimes forget I’m not actually talking to them when we’re together. They made me laugh on days when laughter seemed impossible.

My in-laws fed and loved and supported us. My friends were there for us every step of the way. Everyone who read this website made us feel less alone. I believe your prayers strengthened us.

I am so thankful to God for being with me throughout this entire ordeal and for blessing me with the love of so many wonderful people. Of course, we would appreciate your continued prayers, thoughts, good vibes - whatever positive energy you care to send our way, we’ll take it! Michael, Mara, and I thank you all from the bottoms of our hearts, and we are so happy to finally have some good news to share with you for a change!

Love always,

Camilla

I just wanted to wish everyone happy holidays and let you know that treatment is going well. I’m writing this while hooked up to my third round of chemotherapy and immunotherapy. I have this treatment every three weeks, and, after the next one, I’ll have a PET scan to see what kind of impact the treatments have had. That will be in late January, we think.

The treatment side effects are not pleasant, but they are bearable. I’m on a good mix of nausea meds, so the nausea is at a level I can live with. I have some pain from the white cell boosting drugs, but I’ve had worse pain. Somehow, I have both fatigue and insomnia. You’d think these would be mutually exclusive, wouldn’t you? Apparently not.

I’m still experiencing memory loss for about a week after each round of treatment, but my brain MRI was fine, which was a HUGE relief. We think the memory lapses are just a side effect of the medications. The lapses are frustrating but do seem to get better during the second and third weeks after treatment. Now that I know the brain MRI was ok, I feel less anxious about the memory loss. Plus, it is kind of fun getting Amazon packages in the mail and having no idea what I ordered. (Michael does not think that part is as much fun as I do.)

Since Christmas will fall during the week after treatment (what I am now calling my blackout week), we celebrated early with Mara and had our own family Christmas last Saturday. It was a day full of joy and love - exactly as Christmas should be.

Most days, I stay pretty close to home since it is cold out, I’m tired, and people are extra-germy this time of year. But, I have been able to go a few places. The other day, I went to the art museum and lunch with Mara and my parents. One evening last week, I had enough energy to go see my old coworkers at their holiday party. I went with Michael to Mara’s first Christmas pageant at her preschool. It’s been nice saving up my strength for these kinds of outings.

I have not been doing much grocery shopping or cooking, so we’ve decided to turn the MealTrain calendar back on so that people can sign up to bring meals a couple times a week, starting after the new year. Everyone has been offering, but I wanted to do as much as I could on my own for as long as I could. Now that the fatigue and energy loss is getting harder to ignore, I think it is a good time to take people up on their offers to help so that I can use the energy I have doing things with Mara rather than chores. (I know. I know. I didn’t do that many chores to begin with. My mom came to visit when Michael and I were first married, and she asked me where my vacuum was, and I answered, “I know we have one, because I’ve seen Michael use it, but I don’t know where he keeps it.” So, I’m not great at housework. Sue me.)

I think that’s all for now. I have about 3 hours left to go on my infusion today. I’m going to try to convince Michael to wheel me up and down the hall of the hospital while I stand on the base of my IV pole (I saw a kid do this once, and it looked like fun). Last round, he refused because the nurses were watching, but there aren’t many people around today because of the holidays, so I might be in luck.

Thank you for continuing to pray for us. We feel very loved and supported. Happy holidays and, if I don’t write again before then, happy new year!

Michael and I just received a phone call that our expedited appeal was a success and the denial of my immunotherapy has been overturned. Treatment has been APPROVED!

What a wonderful way to start the day.

This group. What would I do without this group of supporters? I’ll likely never know whose efforts were the tipping point, whose prayer, email, or phone call made the difference, but my suspicion is that every single one helped tip things in our favor, so I thank each and every one of you.

Who would have expected that we’d be dancing around the kitchen celebrating on the morning I get to start treatment?! What a roller coaster this has been. Thank you for riding it with me. Thank you for pushing us up when we reached the lows. Thank you for celebrating the highs with us. And, of course, my heart goes to all the other people out there who are still fighting a denial, who don’t have you wonderful people to turn to for help. I don’t know their names, but I will pray that they succeed as well.

I’m off to the hospital shortly. Know that I will be sitting in the infusion chair with a giant smile on my face.

And to celebrate the fact that these updates will hopefully now return to just being pictures of my family and my attempts to make jokes about cancer…. here’s a belated photograph from Halloween! Mara was Jane Goodall, and Michael and I were her chimps.

Urgent -

Friends,

So many have asked what you can do to help, and I finally have an answer. It’s a little convoluted, so bear with me…

We have become caught up in a bureaucratic nightmare at both our hospital (University of Chicago) and our insurance company (Blue Cross Blue Shield). As I mentioned in a previous update, my doctor ordered chemotherapy and immunotherapy for me. Unfortunately, there were delays in the hospital requesting preapproval from the insurance company, which caused a delay in my treatment starting. (I’ll spare you the details of how that delay unfolded because that was last week’s issue; nothing can be done about it now, and we know they did eventually send the request for preapproval.)

I still have not started treatment. I can start treatment on this coming Friday IF we can get the pharmacy preapproval department at Blue Cross Blue Shield to process the preapproval request by then. We’ve been calling and calling, but we can’t seem to convey any sense of urgency in getting the chemo/immunotherapy regimen preapproval request processed.

I know how much having the right person show some interest can speed things along. If anyone reading this knows someone in the upper echelons of Blue Cross Blue Shield and can ask them to just make a call or send an email just to see if there’s anything that can be done to get someone to put their eyes on my file in time for me to start treatment this Friday, I would be eternally grateful.

Believe me, I feel terrible asking for special treatment. I hate thinking about those who don’t have the resources or support network to even consider making a request like this to speed the process along. But, as I write this, I’m watching my three and a half year old daughter play with play-doh next to me, and my heart breaks at the thought of not using every resource available to me to get better as soon as possible.

Here’s a list of the Blue Cross Blue Shield leadership: https://www.bcbs.com/about-us/leadership. Most, if not all, of these people live and work in Chicago. Is anyone next door neighbors with one of them? Old college buddies? If not them, someone else high up in the BCBS ranks?

Just to be clear, I’m not asking for anyone to pull strings to get treatment approved that shouldn’t or wouldn’t be approved. I just need to know that someone at the insurance company is looking at the request. I just want someone to send an email or make a call to the pharmacy pre-authorization department saying, “Hey, is there any way someone could review this in time for this girl to start treatment on Friday?”

If you know someone who may be able to make this happen, you don’t have to tell me who they are or give me their contact information or anything. Just make sure they know my full name (Camilla Marie Pollock-Flynn). If you need my insurance ID number, email me (cpollockflynn@gmail.com) and I can send it to you.

Thank you, friends. Whether this works or not, thank you for your support, your prayers, your compassion, and your love.

Dear friends and family,

We don’t have a ton of news to report, but we wanted to let everyone know that we got the results from my lung biopsy, and the pathologist confirmed what we already suspected - squamous cell carcinoma in the lung. Even though the doctors had told us to expect this result, it is still a blow.

We do not yet know what my treatment course will look like. We are doing our best to speed the process along, but it looks like it will be at least a couple of weeks before we know my treatment options. Coordinating additional CTs, labs, and appointments with the various medical oncologists is proving to be lengthy process.

Thank you again for all your thoughts and prayers.

It occurs to me as I write it that the phrase “thoughts and prayers” is frequently a meaningless platitude, but I assure you - your thoughts and your prayers are not meaningless to me. The fact that so many people are thinking of us is humbling, motivating, and very, very appreciated. Thank you.

Love always,

Camilla

It’s been a year since I wrote last, and that year has been really good. I look and feel like myself again. I take care of Mara except when she is in preschool. I feel strong. I’ve gotten somewhat used to not talking. Life has been feeling normal again.

Unfortunately, we got some bad news yesterday, and I’m sorry to say we have another rough period ahead. I’ve been getting PET and CT scans every 3-4 months, and the results have generally been good over the past 18 months, but Michael and I are back at MD Anderson for more scans this week, and my PET and CT scans now show new tumors in my lungs.

I’ll try to get this as accurate as possible. I wasn’t really able to absorb what they were telling us when we got the results. There are 4 new tumors in my lungs - two on each side. Two of the tumors are just under an inch long, and two are just under 2 centimeters. There were always small nodules in my lungs that would show up on the CT exams, but they were tiny and didn’t light up on the PET, so the doctors were always hopeful that those spots were just radiation damage. Now, the spots are much larger, and they light up on the PET, so that’s not good.

We still have to get fine needle biopsies taken, but I asked my doctor what else the masses could be, and the doctor said there’s not much else that they could be. Since they grew since the prior CTs and since they light up on the PET, the doctors seem confident that this is metastasis of my hypopharyngeal cancer.

The biopsies will help us get a genetic breakdown of the tumors, and that might help decide what treatment to pursue. There are several treatment possibilities, and my doctors keep saying they are hopeful. The surgeon who gave us the news is a straight shooter, and we’ve been told that he wouldn’t say he was hopeful if there wasn’t hope, so that’s a good sign. Long story short - we won’t know for sure until after the biopsies, but it’s likely that I’ll either have targeted chemo treatment if there are genetic markers in the tumors that can be targeted or, if not, immunotherapy. I’ll probably need focused radiation once they can get the tumors shrunk down. It doesn’t sound like surgery is a good option, though we’ll continue to ask about it.

This is certainly news we never wanted to get. I’d be lying if I said I wasn’t scared, but I also feel strong and ready to start this fight again. Thank you all for the support, faith, and comfort you give to Michael, Mara, and me and to our family members. Please keep us in your prayers. I’d appreciate if you could all pray for Mara especially. At three, she is old enough to perceive but too young to understand, and that is hard. Thank you in advance.

Love always,

Camilla

Yesterday, Camilla and I went to dinner and a movie. If you would have told me six months ago we’d be eating sushi and going to the Wonder Woman movie I would have politely nodded my head but inside, think, I hope so, but it’s doubtful. But there we were, eating, having a quiet conversation and then going to, and staying awake for, an entire movie. Cam ate theater popcorn (which was one of her prerequisites for ever going back to a movie theater - being able to eat popcorn again) and did not want to share it with me, an indicator she is feeling more like herself. It was a great date to share with my wife who has exhibited superhuman strength and resiliency these last 17 months.

Today, we’re celebrating Cam’s 35th birthday. She is currently having afternoon tea with her mom. To say I’m happy is an extreme understatement. There were many times I wondered if Camilla would be able to drink water again, let alone popcorn or tea cakes. I wondered if we’d ever have the banter we’ve shared for 17 years or if she’d have her moxie that made me fall in love with her. I wondered how Mara would react only hearing one parent. I wondered if Cam would want to celebrate birthdays and go out with friends.

I’m proud to say that I don’t need to wonder anymore.

Camilla is able to eat and drink basically whatever she wants. While our method of communication is different since Cam can’t speak, of course, it is still pretty effective and gets better all the time. She has almost weaned off all of her post-surgery medication and is getting her quick wit and humor back in full force. Seeing Cam interact with Mara is one of the best gifts I’ve ever been given (and it’s not even my birthday!). Camilla planned a wonderful, flamingo-themed second birthday lunch for Mara and her two cousins, and we also went to our friends’ son’s fourth birthday party on Mara’s birthday weekend. There was a bounce house (see picture). This past weekend, Camilla, Mara, and I marched in a disability pride parade on Chicago (also pictured below) and made the news. Cam said she wanted to teach Mara about advocacy.

While the road to recovery is a long one, Cam is doing well, despite not being able to speak. Physically, she is almost back to where she was pre-cancer. She recently had surgery to remove the port they used to inject her chemotherapy. She still has a stomach g-tube and we have to wait until the surgeons are confident her new esophagus will remain patent enough for her to get her nutrition and medication orally before they consider removing it. Mentally, the good days are starting to outnumber the bad. Chicago has a ton of activities, especially ones for toddlers. Getting out and just doing things has made a huge difference. Camilla takes Mara to storytime and sing-along at the library. Mara recently finished swim lessons and has music class on Thursdays. We go to the museums and aquarium. We’re planning a camping trip and are daydreaming about a longer cross-country trip, potentially in an RV (I might be dreaming about this more than Camilla). We have a few weddings that we’re excited to attend and catching up with friends that we’ve neglected these past months. I am extremely proud of Camilla and how she is handling this life-changing event. Mara has a hell of a role model in her mother.

I’d like to again take this opportunity to thank the hundreds of people that have helped us during Camilla’s treatment and recovery. I can’t even begin to list everything that the medical teams, friends, family, and complete strangers have done. From the delicious meals, gifts, Amazon wish list items, generous financial support, and just the simple “We’re thinking of you” cards, texts and emails - it has been simply amazing. Thank you all, again. A special thank you to Sherry and Jack; first for giving birth to Cam 35 years ago today, for raising her, for sending her to college at Notre Dame and for allowing me to marry her. More importantly, thanks for just being here and supporting Camilla and me. Thank you for all you have done helping with Mara during this ordeal that I know has been especially tough on the both of you. I will never be able to repay you or anyone else that has been so selfless.

In closing, I want to leave you with an excerpt from a letter a college friend, Chris Manley, wrote to us. Mind you this is one of the most gifted writers I have the pleasure of knowing and he describes Camilla in a way I never could. With his permission I’m using this portion where Chris is describing Camilla to a coworker who he asked to pray for her:

“...she’s even better. Seems to defy all the laws of social physics. The math says you can have a mind that can pass a bar exam, or you can have a personality that lights a room like a fireplace, or you can have great beauty. Maybe you can even have two, given some luck, but not all three. Cam’s got all three, though.”

(Cam blushes every time she hears that. She doesn’t believe it, but I know it is true. Thanks for putting it into words, Chris.)

My wonder woman. Happy Birthday, Love! xoxo

This update is long overdue, but it has been a strange few months, and I have been a bit unsure of what to write. As you know, in February, I had my laryngectomy surgery. Doctors removed my vocal cords and part of my esophagus and used a section of my right thigh to make a new esophagus. Because of the surgery, I cannot speak, although I am hoping to be a candidate for a prosthetic voice device in a few months.

The surgery was the most difficult thing I have ever experienced - far worse than chemo and radiation last year - and the weeks afterwards were the most difficult weeks of my life so far (hopefully ever). The week I spent in the hospital was especially hard, and even now that I am feeling much better, it is still difficult to think about what it was like. I sat down and wrote some of my memories down, thinking it would be therapeutic (it wasn’t), and now that it is time to write a website update, I can’t bring myself to write about those weeks again. It’s far easier to just post what I’ve already written, even though it is ridiculously long and quite personal.

The link below goes to a post about my surgery with far more information than I’m sure anybody wants, so for those of you who just want to know how I’m doing now, please feel free to just skip it altogether and just scroll down to the paragraphs letting you know how things are going two months after surgery.

But for those of you interested in knowing what I was thinking before, during, and after my surgery, here is essentially a peek into my diary. (If I were a Renaissance poet, I would title it: In Which I Yell at Everyone But Make No Sound.) Enjoy. Or don’t, and just skip down further. Whatever.

I’ve been doing very well recently, despite some dark weeks after my surgery. My mood has lifted significantly, especially since I was cleared to eat and drink again after a swallow test during my last trip to Houston. I had honestly never expected to eat again. Although many people can eat after a laryngectomy, my surgeons had warned me not to get my hopes up because my esophagus was so narrow and damaged, so to be sitting here eating popcorn as I write this is something I still can’t quite wrap my head around. Ok, ok, I’ll be honest. I’m eating popcorn AND ice cream! I couldn’t eat for almost nine months - what do you expect?!

Mara thinks it is hilarious to watch me eat. She was less than a year old when I could last eat food, so I am sure she doesn’t remember ever seeing me eat. At breakfast every morning, I can barely get food on my plate before she’s pointing at the chair next to her and begging me to sit down. Michael and I hear her say, “Mama eat! Mama eat!” at least 10 times a day. It never gets old.

Being able to eat again only reinforces how grateful I am for my medical staff. In the days after my surgery, I treated them horribly, and they couldn’t have been kinder or more professional about it. I had an amazing surgical team and great care afterwards. Of course there were a few exceptions, and there are definitely things that can be improved, but Michael and I have been thrilled with MD Anderson and its staff. We are also still receiving wonderful care from University of Chicago, and I have been nothing but impressed by every doctor, nurse, and therapist I’ve met there.

I had some difficulties in the weeks after my surgery with my liver. My labs were elevated but nothing we did seemed to make any difference. Eventually, I had a liver biopsy, and I am happy to report that we received good results. The biopsy did not find any cancer in my liver, which is a relief. Moreover, it showed signs that the liver was healing on a cellular level, and about a week later, my liver enzymes started to decrease. They are still above normal but seem to be headed in the right direction.

Not everything is back to normal. Obviously, not being able to talk is still a huge life change. I often forget that I have lost my voice and try to talk. Every time this happens, it feels like a punch in the gut. Michael also forgets, and he frequently asks me questions from another room which, obviously, I have no way of answering. More gut punches.

We also get occasional surprises that remind us that things are not yet back to normal. Needing a liver biopsy was one. Another occurred a couple weeks ago when Mara and I were cuddling, and she accidentally knocked my feeding tube out. I had to spend the day in the emergency room and ultimately have a small surgery to insert a new one. Never a dull moment.

Fortunately, Mara seems to be adjusting well, and I have found ways of communicating with her without speech. She picks up sign language faster than I can learn it. Her brain is such a little sponge. She amazes me every day. Lately, she has been making me laugh by making up signs when she doesn’t know them. Someone will ask her what the sign for something is, and she’ll just wave her hands around if she doesn’t know the answer.

Beyond just being a new way for me to communicate, I am finding sign language fascinating. I had no idea of the history behind it, and I assumed it was a form of pantomime, but it really isn’t. I’ve been reading about the history of the deaf community and the formation of sign languages (of which American Sign Language is just one of many). Did you know Alexander Graham Bell was opposed to American Sign Language? He wrote that it was a “calamity” and thought that the deaf would use it to rise up and be insurgent against the United States. It is probably for the best that I can’t talk right now, or else I’d be driving everybody around me nuts telling them about the history of sign language, as I tend to do when I get caught up in a topic.

My energy level is not back to normal. I still have to rest for part of each day, but I am feeling healthier than I have in a long time. I have been doing physical therapy to strengthen my leg (I have a huge scar on my right thigh from where they removed the skin graft for my throat), and while I still have difficulty walking fast or going up and down stairs, I’m much sturdier than I was a few weeks ago.

Enjoying time with Michael, Mara, and our families again is amazing, and we are all very thankful. Michael, Mara, and I had a wonderful Easter weekend with my parents. We took Mara to our neighborhood Easter egg hunt, and we went out for brunch. Sitting at the brunch table with a cup of coffee and a plate of food before me was surreal. I’ll post some pictures below.

Being able to celebrate with my parents and Michael is especially wonderful because they are three people who I know for sure would have laid down in my hospital bed at any point during this past year if it meant that I could get up and be healthy. I will never be able to repay the sacrifices they have made for me. The same is true for my siblings.

My good days are starting to outnumber the bad days, and for that I am grateful. I still get wonderful messages from friends and family around the globe. I am not great about responding - partly because I prefer to spend my “good” moments with Mara rather than at my computer, and partly because of the sheer volume of them. As I write this, I have over 1,700 emails in my inbox. The vast majority of them are junk, to be sure, but it is still going to take me some time to weed through them.

I am sure I have expressed this before, but the generosity you all have shown to us during the past 14 months has been amazing. Truly staggering. It makes me wonder what I could have done for others and failed to do. I wish I had sent notes when I heard that someone was ill, even if I hadn’t spoken to them in years. I wish I had cooked meals for friends going through difficult times. I wish I had run errands for, done chores for, or just sat with someone who needed it. All of these things have been done for me, and I wish I had been doing them first. I can’t tell you what it has meant to me. I can never repay the kindness that has been shown to me, but I will spend the rest of my life trying.

Our next trip to Houston is in June, and I will find out then if I can get the speech prosthesis. A lot of people have great success with it, and a lot of people just have complications from it. Please keep us in your prayers. You are in ours.

Camilla's surgery completed around 5:00pm today, February 16th.

The surgeons are confident they removed the cancer and were able to get clear margins. They are keeping her sedated and in the ICU tonight.

Her ability to use a speech prosthesis and eat and drink again is unknown at this time. We still have a long road of healing and rehabilitation ahead.

Thanks to all for your prayers, support, and kind words

This will be a very short post because I am sure you are all still exhausted from reading the last post, which was extremely long. I just want to let everyone know that my total laryngectomy & free flap surgery is scheduled for February 16, 2017 at MD Anderson Cancer Center in Houston, Texas.

I will have inpatient and outpatient follow up care, swallow studies, a speech prosthesis placement, and speech rehabilitation for approximately five months afterwards, although some weeks within this time period will be just for healing.

Michael and I are still trying to determine whether we should stay in Houston for this entire period, or whether there’d be a benefit to flying back and forth. We are so appreciative of all of the housing information you have sent to us. You are the best support team we could ask for.

I also want to thank you all for the thoughtful notes and generous gifts many of you sent after my last post. I am behind on my thank you emails (as always), but I do appreciate you thinking of us, and I will eventually get emails sent to everyone (although a few gifts were sent anonymously - I am not sure if this was intentional or if Amazon just forgot to include the sender’s name).

Please keep the prayers coming, especially as February 16th approaches. I am doing my best to remain calm and confident leading up to the surgery. I am successful at this about 2% of the time. I do have a new book that someone recommended about how to visualize a healthy surgery and remain calm before and after surgery. I hope it helps.

love you all and am grateful for everyone who reads this.

Mama, Dada, and Mara

My family visited this past weekend

Morning snuggles in Mama and Dada's bed

Since my last post, we got the biopsy results back, and they were positive. So, the cancer is officially back in my throat. The PET scan did not show any spread of the cancer to other areas of the body, so that is the good news. From what I understand, the tumor is right at the beginning of the esophagus, directly in line with my vocal cords. It is a bad place to develop cancer because your breathing, speaking, and swallowing functions all rely on that area.

My doctors at University of Chicago have recommended a complex surgery to remove the cancer. Unfortunately, they tell me that in order to surgically remove the cancer, my vocal cords would also have to be removed, leaving me unable to speak naturally. The procedure is called a total laryngectomy with a free flap. In short, my larynx would be removed, as would a portion of my esophagus, including the portion with the cancer. My trachea would be moved up and would be attached to a stoma at my neck so that I could breathe. A plastic reconstructive surgeon would then use skin from my forearm or thigh to create a tube, and that would be implanted at the top of the esophagus, where the portion had to be removed. Skin grafting would be done to close the area on my arm or leg where skin had to be removed. The surgery is expected to take eight hours or so. I would remain in the hospital for approximately two weeks afterwards. (For those of you with a medical background, this procedure has been recommended as opposed to a total laryngectomy with a jejunum transplant or a total laryngectomy with a gastric pullup.)

Thinking about the surgery makes me nauseous. I have been having panic attacks and feel just overwhelmingly exhausted. The thought of not being able to speak is horrifying. The hope is that a voice prosthesis (a small plastic piece that fits between the trachea and esophagus) could eventually be implanted after surgery. The prosthesis allows you to talk, but it would not sound like my natural voice. It is an “understandable” voice, but not a pretty one. Even so, the prosthesis could not be implanted for three to six months after the surgery, so I would be unable to make any noise at all for those months. I have purchased several books on sign language, thinking that might be useful, and we are looking into vocal banking, which would record my voice and preserve it digitally. Michael and I are headed to a rehabilitation center today to learn about assistive technologies I might be able to use until I would be able to try the speech prosthesis. Unfortunately, the speech prosthesis does not work for everyone, so there is a chance that the speech loss could be permanent. I am hopeful that that will not happen but can’t help but worry about it.

The thought of not being able to speak to Mara, who is too young to understand why, breaks my heart. I feel it as a physical pain, and it sickens me. I can’t write more, becuase I am getting too upset, but needless to say, it consumes my thoughts. I can’t even begin to contemplate not talking with Michael, my mom and dad, my sister and brother. It is too much.

Even as we try to wrap our heads around this surgical recommendation, Michael and I are pursuing second (and third and fourth…) opinions. We have appointments scheduled at MD Anderson and Sloan Kettering after the beginning of the year. We have also been in contact with a laryngeal surgeon at Mayo, and one of my doctors has reviewed my case with a top vocal surgeon at Mass General. We are sending my records all over the country to see if someone might have a reliable alternative for us. Please, please pray that we find another cure, or, at the very least, that we get confirmation that we are doing the right thing, so that we won’t spend the future second guessing ourselves. I am forever grateful for all our family and friends who helped get us in contact with top medical providers all over the country to review my case.

I don’t really know what else to say at this point, except that this is the lowest point we have been at since the beginning of this entire ordeal. Unfortunately, I expect there will be even lower points going forward. I am finding myself consumed with unproductive and angry thoughts. I am furious that when I was diagnosed with esophageal webbing and Plummer Vinson syndrome years ago, nobody warned me about my increased cancer risk or discussed options for monitoring my throat and esophagus for signs of cancer growth. Resentments like these are not useful or healthy, and I am doing my best to let them go, but it is hard.

Please keep us in your prayers. Please be there for Michael, Mara, and my family who are suffering through this with me.

Despite this news, we are doing our best to have a happy, but quiet, Christmas for Mara. Thanks to Maura and Adam Dell who decorated a tree for us. Mara loves it.

After my unexpected tracheotomy, I spent six days in the hospital. Just like when I was getting chemotherapy, Michael didn’t leave my side, spending his nights on a couch in my hospital room. He even ate hospital food for most of his meals so that he didn’t have to leave me to go get food. My mother stayed with Mara at our home, and my sister flew to Chicago to help. I can never thank them all enough.

For much of the time in the hospital, I had no voice at all and had to communicate by writing everything down, signing/pantomiming, or pointing to symbols on a picture board. It was extremely frustrating, and I did not handle it well at all. I was quite a little beast to my nurses and doctors, but they took good care of me nonetheless.

It was very difficult getting used to the tracheotomy tube during the hospital stay. Physically, the trach was painful for several days, and there were several times where I felt like I couldn’t breathe through it, which was very scary. As bad as those first few days were physically, the emotional toll was worse. It was (and still is) hard to contemplate having to breathe through a trach going forward. My doctors say I will need the trach for at least six months to a year, and possibly forever. To be honest, I cried buckets of tears for much of the time I was in the hospital. I was miserable and angry and defeated. My voice started to come back on the last day of my hospital stay, but it was very gurgly and robotic, and it didn’t sound like me at all. Rather than making things better, that made me feel worse.

Even after I was released, I remained miserable and weepy for my first few days at home. I absolutely fell apart the first time I tried to take a shower with the trach (which is quite an ordeal, involving wearing a plastic neck wrap to prevent water from going into the airway). I was sobbing when I saw Mara for the first time after arriving home from the hospital. Seeing me so upset scared her and made her cry, which only made me cry more. I can’t begin to explain how difficult it is to think that Mara may not ever remember me without a trach or that she may not remember what my normal voice sounded like. Thoughts like these made me want to curl up in bed, and I spent a couple days doing just that, ignoring all the kind emails and text messages I was receiving. I played with Mara but did little else. Michael, my mom, and my dad took care of me, but I was pretty inconsolable. I couldn’t even write a website update, because all I could think to say was how horrible everything was.

After several miserable days and sleepless nights, I finally realized that if I have to have this trach in for a long time, I don’t want to spend that entire time unhappy. I hate having a trach, and I will always hate it, but I REFUSE to let it ruin my life. I may not be able to do the things I used to do, but I realize that things could be worse, and I am determined to be positive and enjoy myself despite this damn breathing tube. Instead of being upset with the way things are, I am trying to be grateful for everything I have. I read some stories online about parents whose children have trach tubes, and I realized how lucky I am that I am going through this myself rather than watching Mara go through it. I also realized what a baby I was being - there are children that deal with this everyday, and they still lead happy and joyful lives.

Things have been much better since I decided not to be miserable. Rather than rely on Michael to perform all my trach care, I’ve learned how to do it myself. (It’s a lot of work. Our bedroom is now filled with even more medical equipment than we already had. I have to use a nebulizer, humidifier, and suction machine, as well as cleaners, replacement trach parts, filters, etc. That alone was overwhelming at first.) I’ve figured out how to cover my trach with a scarf and still breathe. I’ve gotten much better at speaking with the trach in, and my voice doesn’t sound completely normal, but it is stronger than I expected it to be. I’ve spent lots of time with Mara and have figured out how to interact with her without damaging any of the various tubes on my body. Fortunately, she doesn’t care about the trach at all. For the first couple of days, she looked at me a little funny when I tried to talk, but now she doesn’t even seem to think anything of it. In fact, she thinks it is quite funny to hear me cough now, and she loves when I make a whistling noise through the trach (a sound which was making me sob when I was in the hospital a couple weeks ago).

I’ve left the house on brief errands when I can, and I am getting used to interacting with people even though I have the trach (not to mention that I again have the nasogastric tube taped to my face, which always garners some second glances and, often, blatant stares). With a scarf wrapped around my neck, most people don’t even see the trach. When I talk, I have to cover the trach tube with one of my fingers, so that makes it more obvious, but I’ve decided that I’m not going to be embarrassed by it (easier said than done, but I’m determined). I’m hopeful that when Mara gets older, she won’t be embarrassed by it either. We have a book that helps explain to kids what a tracheotomy is and why someone needs a tracheostomy tube, and I hope that helps her, and eventually her friends and classmates, understand it. That is not to say that I have lost hope that the trach tube can come out in a year or so…. I’m just preparing myself for having it for the long term so that I can be pleasantly surprised if I get to have it removed sooner!

When Michael and I were first married, we used to joke that our family motto was, “Good enough!” When we missed our flight to our honeymoon destination, Curacao, and ended up in Miami for a night, we shrugged and said, “Oh well, good enough.” When our home was messy or our dinner consisted of cheese and crackers because we hadn’t made it to the grocery store in a while, we’d say, “It’s good enough!” I had forgotten this for a while, but I remembered it lately and realized I need to take the same attitude with things right now. My life may not be what I expected it to be, but it is more than good enough. I know that no one would ever wish for a tracheotomy, and I certainly wish I hadn’t needed one, but my cancer is gone, and that is good enough. I don’t have the career I once had, and I don’t look or feel like I used to, but Michael loves me, Mara is happy and healthy, and I have the best family and extended family on this planet, and that is definitely more than good enough! I still can’t eat or drink, and I still have to have surgeries every few weeks to try to stretch my esophagus and recover my ability to swallow, but my throat is hurting less than it used to and I might be able to eat or drink again soon, and that is good enough for now.

This post is longer than I anticipated, so I’ll wrap it up, but I do want to say that I was especially thankful last night that I’ve decided to try to be happy despite everything that has happened. It was Halloween, and Michael, my mom, and I took Mara trick-or-treating. I only had the energy to go to a few houses, but it was the most fun I’ve had in months. Mara loved it, and she spent the whole time smiling at all the other children in their costumes. She’s never had candy and didn’t understand what people were handing her, but she loved going up to people’s doors and saying “Eat!” (the only part of ‘Trick or Treat!’ she can say)! Below are some pictures. In an effort to teach Mara about strong women - and because I sometimes need a reminder - she and I both dressed as Rosie the Riveter! We can do it!

I’ll try to write again soon. In the meantime, please continue to keep us in your thoughts and prayers. I am grateful for you all.

I have WONDERFUL news! I’m still in shock writing this. As you know, two weeks ago, I got the news that I had a positive biopsy again and that doctors were recommending a drastic surgery, which entailed removing my vocal cords and esophagus. Michael and I were devastated and immediately started looking for other treatment options. We also insisted on additional testing, including repeat biopsies, to confirm the diagnosis and determine where the cancer was exactly. Last week, I had a PET scan, a CT scan, and a surgery to take additional biopsies. I am THRILLED to report that the PET scan and CT scan both came back completely clear. There were no tumors or metastasis shown on either scan. Even better, I received a phone call from my ENT doctor today, and he said that the repeat biopsies showed NO cancer. Instead, the biopsy results were consistent with post-radiation tissue changes. He said that the pathologist who reviewed the positive biopsy from two weeks ago even went back and re-analyzed that biopsy, and now they don’t think that initial biopsy showed active cancer cells either. While they are going to “watch me like a hawk” going forward, I am cancer-free once again!

To say this process has been a roller coaster would be putting it mildly. The truth is these past two weeks have been some of the worst days of our lives. Trying to contemplate life without vocal cords has been so difficult, and Michael and I had some very hard meetings with surgeons finding out what the laryngectomy and gastric pull-up surgeries would entail. We have been agonizing over where to go for second opinions. Fortunately, with these new biopsy results, I do not need these drastic surgeries after all! The thought of not being able to talk to Mara, and her not being able to understand why, still makes me feel nauseous. I feel so grateful for these new biopsy results.

This feels like a miracle. If it’s not a miracle, it’s the closest I’m ever going to come to a miracle! I am overwhelmed by this good news and feel unworthy - but so, so grateful - for God’s intervention into my life. Thank you to everyone who sent your prayers, love, and thoughts. I truly believe you made this happen.

I still have a long way to go until I am healthy, but it is a much easier path than I would have had if we had gotten bad news this week. In the last couple weeks, I have stopped being able to swallow anything, even water. Next week, I will have surgery to open my esophagus in the hope that I will regain the ability to swallow. Unfortunately, in order to keep the esophagus open, the doctors will have to re-insert a naso-gastric tube like the one they took out a couple months ago. I am disappointed to have the tube back because it makes it more difficult to get close to Mara and because it increases my pain and nausea, but it is much, much better than the surgeries I thought I’d be having, so I am just grateful for that. I will have to have multiple surgeries for the esophagus, but we are not sure of the schedule yet. I do know that I’ll have to spend at least one night in the hospital after each procedure. Last week, they let me go home after the surgery to take biopsies, but I had swelling in my airway from being intubated. I woke up the next morning with my airway closing. My oxygen saturation dropped into the mid 80s. Michael had to call 911 and an ambulance had to take me to the hospital. Luckily, Michael and my mom were both home with me when it happened, and they both remained very calm. (I did not.) The firemen and EMTs who responded were able to stabilize me and get me breathing normally again. I spent the night in the ICU and was released the next day. In case my airway swells again, they will keep me in the hospital after each procedure for observation going forward.

I don’t know what else to say except that I am so grateful for all the kind messages of encouragement and help we received over the past couple weeks. Thank you to everyone who suggested a doctor or hospital for a second opinion. Thank you to everyone who prayed for me. I could not have imagined a better outcome. I hope to continue to only have good news for everyone going forward. I love you all.

I had yet another surgical procedure this week, and it went fine. I had some minor complications the next day when my airway started to swell, but it was fine after an evening in the ER and some steroids. That’s not really why I’m writing. I’m writing because this week my grandfather passed away. I’m not sure if this is the right forum for this, but I tend to need to write to organize my thoughts, so here goes.

My whole life, Popi lived just a few miles away from my childhood home. When I was young, we spent almost every Sunday morning with him and my grandmother at church and then brunch, and almost every Sunday evening we went to their house for dinner. I can’t tell you how many memories I have of my grandparents from those times together. At Sunday brunch, he always let us eat the praline buns that were served before the meal, even when our parents would have said no. He also used to sneak us chocolate sodas and fruit flavored gum whenever we wanted. He shared our childhood sweet tooth. He introduced me to Newman’s Own salad dressing, Dean Martin and Tony Bennett music, and the joy of watching hummingbird feeders on the patio. For the rest of my life, whenever I smell steak grilling, I will be transported back to his kitchen and those Sunday dinners.

We had almost every birthday party at Popi’s pool, and he always made sure to buy the most wild and large pool floats for us to play with. He had these two statues of Greek gods by the side of his pool, and I remember always being petrified that the statues were going to fall on us when we swam past them.

Popi loved new technology and filled his home with all sorts of gadgets and gizmos. He loved anything electronic; he was the person for whom birthday cards that play music were invented. He had a video phone decades ago even though he only knew one other person with one (his own father), so they could only use it when they called each other. He had a camera that printed 3D pictures that were mind-blowing at the time. He had an automatic soap dispenser in his kitchen years before they ever became the norm in public restrooms. He had an exhaust hood on his stove and curtains in his bedroom that opened at the touch of a button, and, when we were young, he used to pretend he could open them by magic. In fact, he was actually a pretty talented magician and taught me the only card trick I know to this day (and it’s a good one). He was not, however, a very talented physician - Once, in third grade, I had to go to school with hives all over my face because Popi mixed up an aloe vera plant with some other kind of cactus he had growing in his kitchen and put the cactus juice on my face to help with a sunburn. Turns out not all cacti are therapeutic! We learned that the hard way.

Popi had a flair for the dramatic. When he remodeled his house, he put in the largest shower that, still to this day, I have ever seen. We used to put on bathing suits and go over and run around in it. When we got bored with that, we could always go downstairs and play golf with the putting hole he had cut into his basement floor. He wanted his home to be fun.

Popi was a shrewd and savvy businessman, and, although he retired when I was still very young, he loved to tell us stories of his time in the glass business and the movie business and to show us mementos from those years. When my dad and his siblings were growing up, they alternated time between New York and California for Popi’s jobs. His claim to fame was discovering the soundtrack that became the movie musical, The Wiz. I’m more jealous that he and my grandmother got to go to Monaco when Princess Grace was hosting a movie premiere. After he retired, he had to find ways to stay busy. My favorite project of his was when he stuck straws in his nose and dunked his head into a bucket of plaster and made a model of his own head, which he then hand painted and decorated. To this day, I think that bust is my favorite thing in his house because it shows his sense of humor, originality, and determination.

Popi would have been 91 next month. He lived a long life and was in good health up until the last few years when dementia set in. Like any of us, he was not perfect, but, oh man, did he love us. He was generous beyond measure. I loved visiting him at his winter home in Florida. A few years ago, when the dementia had just begun, Michael and I went down to visit Popi and my step-grandmother, Millie, in Florida. We went to church together and Popi held my hand for most of the mass. It was the sweetest moment.

He loved golf and played as long as he was able. He loved attending mass and went every Sunday until he wasn’t well enough to go anymore. He loved his four children and eight grandchildren. Even when words failed him, he would light up when my dad came into the room. When names failed him, he started calling my father “Big guy!” I have no doubt he would have adored his four great-grandchildren had he gotten the opportunity to know them when he was healthy. I will always be sorry that he never got to meet my Mara.

As he got older, he softened. I loved when he told me how much I looked like my grandmother, Camilla, who died when I was young. It brings some consolation to know that he is reunited with her now. It is also comforting that he is reunited with his brother, Bobby. It hurts to think about how lonely Millie must be without him now. I’m so sad for my father, my aunt Patty, and my uncles Frank and Mike, and for Popi’s sister Penny. Their loss is tremendous. It hurts to think that we won’t be able to visit him anymore. The last time I saw him, we had lunch at his house and spent some time sitting with him, listening to music, going through old records, and playing with his dog. He was happy and smiling the entire time, but he was too ill to say anything to us. Even though he was happy that day, that’s not how I’m going to remember him. I’m going to remember the man who used to entertain us at the kitchen table after Sunday dinner, who let us shoot bb guns in his driveway and chase lizards on his front patio, who came to all of our graduations and holiday meals. I’m going to remember him happy and harsh and witty and original. And I’m going to miss him.

Hug your loved ones a little closer today and tell them that you never want to lose them, not even when they’re 91.

For those of you who want to know more about my grandfather and his very interesting life, here’s a link to his obituary.

I want to thank everyone for their thoughts and prayers this week. They have been a great comfort to me. My surgery this morning is over, and I am home resting in my bed.

In a lot of ways, the surgery went really well. The doctor was able to get a small pediatric “spaghetti” scope through my esophagus which means it didn't close completely during radiation. Since there's an opening, albeit small, the doctor can attempt to widen the esophagus through a series of dilation surgeries over the next couple of months. Unfortunately, he couldn't do any dilations today because my esophagus has several large ulcers from the radiation which need to heal first. These are likely what has been causing me so much pain, especially because they've been constantly rubbed and aggravated by the tube down my nose and throat. That's the best news of all today: they were able to remove my nasogastric tube!!! It already feels like a huge improvement. Most of all, it is wonderful being able to snuggle close to Mara without worrying about her pulling it.

So, the plan for now is to let the ulcers heal and then attempt dilations, beginning in two weeks. It will be quite painful, especially considering I'm already in a lot of pain from today and they didn't even dilate, but there is finally some light at the end of the tunnel. After the pain from the procedures recedes, I can keep working on my swallow, and the hope is I'll eventually be able to eat and drink safely.

I'm sorry I can't better articulate what all your supportive messages, emails, texts, prayers, and thoughts mean to me. I am beyond touched by the outpouring of love and support I have received. I know you will help get me through the next few rough months. Love to all.

It has been a while since I wrote to let everyone know how I was doing. I wish I could say I’ve been steadily getting better over the last few weeks, but that’s not really the case. I do have some days (like today) when I don’t feel terrible, but otherwise it has been a difficult summer. Even though the cancer is gone, recovering from the radiation and chemotherapy is proving to be very slow and difficult.

As you know, I lost my voice as a result of the radiation treatment. I’ve been speaking in whispers for the last couple months. Two weeks ago, I saw a voice specialist. He’s not entirely sure why my voice is taking so long to recover, but he did put a scope into my throat and verified that both my vocal chords are moving, which is great news. Since both chords are moving, my voice should eventually recover, although I may end up sounding differently than I did before treatment. Over the last couple of days, my voice has been slightly louder. Today, it was strong enough that I was able to call my sister on the phone and have her be able to hear me. For the past few months, we’ve been relying on FaceTime, and I would have to just nod or shake my head at the camera. Today, when I called her and started talking, she said, “I can hear you!” It was a big moment.

While it has been difficult not being able to talk, it has been even worse not being able to eat or drink. I developed pneumonia a few weeks ago from aspirating when I swallow. A swallow study at that time showed that about 15% of the liquids I consumed were going into my airway because my epiglottis was not closing properly. Since then, I have not been allowed to eat or drink except for the occasional sip of water. I’ve been working with a speech pathologist to try to re-learn how to swallow. I have daily exercises I have to do, and they are very painful since it is painful for me to swallow. Last week, I had a repeat swallow study to see if there was any improvement. Unfortunately, my epiglottis is still not functioning correctly, and it is still not safe for me to eat or drink. On a positive note, there was some improvement in my swallowing - it just still has a ways to go. Hopefully, I’ll continue to improve and will eventually be able to swallow liquids without any aspiration. I’ve been practicing at home with water. I can have 4 to 6 half teaspoons of water a day.

Since I can’t eat or drink really, I’ve been getting all my hydration intravenously and my nutrition through my feeding tube, so I spend many hours of my day hooked up to an IV pole. I have one in my living room and one in my bedroom. I’ve been in a lot of pain, so I’m taking pain medications, which make me sleepy, so I spend much of the day in bed resting. Lately, however, I’ve had a little more energy, and I think this is a good sign. When it is not too hot outside, I try to walk outside in my neighborhood with my mom, Michael, Mara, and our dogs.

Since I have completed treatment and some time has passed, my doctors think it is time to start trying to repair some of the damage to my esophagus from the radiation. On August 24th, I’ll have a surgical endoscopy, and my gastroenterologist will attempt to dilate the narrow areas in my esophagus or the areas with scar tissue. This is a risky procedure because my esophagus is fragile from the radiation, so I am quite nervous and would appreciate your prayers. The doctors think it will ultimately take multiple surgeries, so I’m scheduled for two additional procedures after the one on the 24th.

While I am not looking forward to the surgery, one thing I am happy about is that my doctor is going to try to remove the tube from my nose and throat during the procedure. I’ve had the NG tube in place since March because it was supposed to prevent my esophagus from closing up completely during the radiation treatment. It did what it was supposed to do, and I’m grateful for that, but the tube drives me insane. It is painful and ugly, and it makes it difficult to hold Mara because she just wants to grab the end of it. I will be very happy to see it go. I’ll still have the feeding tube in my stomach, but I can cover that one up. When I’m in public, the nose tube makes it obvious that something is wrong with me. I get lots of stares, especially from little kids. Without the tube, only my haircut will give away that I had cancer. I didn’t lose all my hair, but I lost a lot on the sides and back, and it is growing back in coarse and wiry. I’m definitely going to have a few more months of bad hair days coming up…

I appreciate your continuing thoughts and prayers. I need them now more than ever because this recovery process is rough and I’m finding it very disheartening. I’m not a patient person, and it is frustrating me that I’m not getting better faster. I know, with time, things will go back to normal, but it is painfully slow so far. I miss work and my colleagues. I miss hanging out with friends. I miss my normal life. Michael and my mom are taking great care of me and their patience has not wavered once. Michael still takes me to all of my doctor’s appointments and gives me all of my medications and hydration. My mom has been in Chicago since March taking care of Mara and me. She is amazing. I can’t wait to get better to take away some of their stress and worry.

I love and miss you all!

This is Barb, Camila’s mother-in-law. When I was a child my grandmother taught me to always thank my mother on my birthday for giving me the gift of life. After all she was the one who brought me into this world, who nurtured me and sacrificed for me and loved me unconditionally through thick and thin. And so today, on this first anniversary of the birth of Mara, it seems most fitting that we all stop and honor Camilla, Mara's mother, and reflect on the multitude of ways that she has nurtured, sacrificed and given unconditional, selfless love to her precious and beautiful daughter.

In writing these updates, Cam has reported the details of her treatments in a clinical and at times emotional way but as one who has spent numerous days and nights in the presence of Camilla, Michael and Mara these past months I would like to give you a small glimpse into what kind of mother Cam has been during this difficult journey.

In the first days of her diagnosis when Cam learned she could no longer breastfeed her 7 month old she turned to the Doctors and rather than cry and whine she put on a brave smile and responded "Well, I guess that means 10 points lower on the SATs!". Upon hearing that response the Doctors knew they had a fighter to contend with, and one with a sense of humor! Cam went on to immediately wean her baby, a physically painful process, knowing that it would speed the beginning of her own treatment...in an effort for her to be well as soon as possible and ultimately be an active mother again.

In the next few days, surgeries were scheduled to prepare for treatment with the expectation that Cam would be in the hospital for 72 hours, then home again before her first five day stay in hospital. She kissed her baby goodbye, not knowing those 72 hours would turn into 10 days. Although desperately missing Mara, Cam selflessly chose not to risk bringing the baby to the hospital and exposing her to the dangers there, much less the tease of a short visit followed by another goodbye.

The weeks, during her 3 and 1/2 month treatment, while Cam was home were sometimes hard to watch, as Camilla often had to give over the care of Mara to others. But any time she had the strength Cam was climbing in the playpen with the baby or having Mara sit on her lap despite Mara grabbing at every tube...Cam participated in bath time, and whenever possible she lovingly fed and cuddled with Mara for nighttime feedings. Even when someone else put Mara to bed Cam almost always crept into the nursery just to pat her daughter and place a kiss on her tiny cheek. When Cam was first diagnosed Mara was just beginning to eat solid food and although Cam has been unable to eat much and has battled incredible and debilitating nausea she has still taken an active role in teaching Mara to eat and introduce her to new foods. When it would be much easier to remove herself from the sights, sounds and odors of food, Cam still manages to be part of family mealtimes and even lets Mara shake her food cans and help Daddy fill the IV bags that feed Mommy.

Above all, and in a most amazing way, Camilla has demonstrated her true and selfless love for her daughter through her indomitable spirit and will to beat her disease. For nearly 6 months, Cam has faced each day with a single mission...to get well! There have been no pity parties, no why me's? At least not for more than a few minutes. Sherry made a sign that hangs on the bathroom mirror that reads " This is temporary" . And that is the mantra around here. Camilla has endured so much pain, tough setbacks, and still has a long way to go until she is back to full health. Every Wednesday she pulls herself out of bed, dresses and endures a visit to the lab and to the various doctors that make up her medical team. She kisses Mara goodbye, never sure when she will return, in a few hours or a few days if the lab values or checkup does not go well.

One thing is absolutely for sure....Mara has a mother who loves her beyond any words can describe, who is willing to fight through any pain, to endure any procedure, even to suffer through any separation to insure that there are lots of birthdays to celebrate together in the bright future this very special mother and daughter share.

Thank you Camilla for the gift of Mara. You are a beautiful and inspiring example of a mother's love. Happy First Birthday to Mara!

All my love, Barb

Hi friends and family,

This is Caitlin, Camilla’s younger sister. I’m hijacking the update today. Unfortunately, Camilla is back in the hospital. At her weekly checkup, Camilla’s doctors heard some fluid in her lungs. The X-ray shows she has pneumonia which they are treating with antibiotics. Although we wish she could be home with Mara, hopefully being in the hospital will help her breathe and feel better in general. There are two types of rooms to stay in, and luckily Camilla and Michael got the nicer type in the “new” hospital wing. There’s always a silver lining, as my dad would say!

Because I get this rare opportunity to share with you all, I thought I’d tell you about Cam and Michael and their unbelievable marriage. In their home is a framed quote, a wedding gift from Michael’s sister, Erin. It says,

“Nothing is more practical than finding God, that is, than falling in love in a quite absolute, final way. What you are in love with, what seizes your imagination, will affect everything.

Fall in love, stay in love, and it will decide everything.”

I can’t even begin to explain what I witnessed while visiting Chicago earlier this month. I slept on the couch (in my mom’s usual spot) to help with Mara for almost a week, so I was able to watch the schedule of a typical day for Cam and Michael (as well as Mom and Mara). The day starts with Michael giving Camilla her medicine, helping her get hooked up to fluids and starting her first can of food (through her stomach tube). He has a cute little white board where he keeps track of the number of cans he has given her throughout the day (she needs 5 a day). The whole day is scheduled around Mara and around Camilla… luckily my mom has Mara down pat, and Michael’s organized, self-made checklist allows him to take care of Camilla.

There are times Cam will just look at him, yet Michael will know what she’s needing or thinking or what’s hurting, and if not, then he has a pretty good idea. The day ends with a 30 minute routine which includes lots of medicines in the G-tube, cleaning the tube, mouthwashes, mouth guards, and finally a sweet foot massage with lotion from Michael. During this time, they chit chat, almost talking in their own language, picking on each other or just giggling.

When I first saw Michael with my sister 15 years ago, I knew they were perfect together. Seeing Michael take care of Camilla, and the unconditional love they have for each other is the best demonstration of marriage. They live their vows fully and with a smile on their faces.

I know that one day this will all be a memory as it is just temporary, but one thing I know will last forever is this type of love. And for all that Michael does, I can’t thank him enough. All of his family and ours are so grateful to him. And for my sister keeping her strong spirit, sense of humor, and still looking oh-so-stylish just to go on walks around the block, we are proud of you. We thank you both for your demonstration of love for Mara and all of us.

Please continue to pray for Camilla’s healing, comfort, strength and more than anything, positive scan results in a few weeks. And for my mom and dad, as well as Kara and Barb who are caring for Mara. Luckily Mara can’t look at ‘Nana Sherry’ without laughing, so that brings a smile to everyone’s face!

Have a happy and safe fourth of July!

I’ll leave you with this… “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” ~Philippians 4: 6-7~

Xoxo,

Kiks

I’ve spent the last week trying to think of the words to describe how Michael has been as a husband and father during this experience, and there just are no words. Michael used to be squeamish around anything medical. He couldn’t stand the sight of a needle and could not discuss any medical procedure. The most medication he handled was an occasional allergy tablet. This afternoon, he gave me 17 different prescription medications through a G tube and removed a needle from my port so that I could take a shower. This was after driving me to my second doctor’s appointment of the week. He did all this without batting an eye.

At the hospital, Michael kept a massive checklist of all my medications, symptoms, vital signs, and lab results. He checked and double-checked what everyone was doing and was my advocate for every procedure. Several times he stopped the wrong medication from being given. Several times he was angry with the care I was receiving. He was demanding and got me what I needed when I was too weak to do much except lie there. He was always on my side.

Michael has shielded me from the outside world and has taken on every burden that he can. He schedules all of my outpatient nurses, keeps track of all of the medications and supplies, deals with the insurance companies and billing matters. Any one of these tasks is demanding and he is handling them all. The other night, I was with Michael at the pharmacy to pick up yet another prescription. Michael knew the names of everyone working behind the counter and questioned them about their recent vacations and weekend plans. At the hospital, he was able to remember an endless stream of nurses and nurse technicians, and he got to know all of them. People would stop by our room to say goodbye to him before leaving for the week.

Several weeks ago, I lost my voice and everyone except Michael has had trouble understanding me. He has been my voice for the last couple months. When I talk, everyone looks at Michael to find out what I said. Most days, it seems he is the only one who can hear me.

Beyond responding admirably to medical aspects of my treatment, Michael has been my constant emotional support. He immediately told me we would take this one day at a time, and he truly has done that. He has not let me get caught in the anxiety that I can feel bubbling up about whether the treatments have worked. He keeps reminding me that we can only take one day at a time and wait for the next result. He keeps pushing me to plan a fun vacation or something to look forward to after this. He reminds me that there will be a day when life will feel normal again, even if it doesn’t feel like it now.

As a father, Michael shines. He has not let this diagnosis change the way he interacts with Mara at all. He sings with Mara, laughs with her, tickles her, plays games with her. Every night he gives her a bath. There is no sadness or sickness allowed and if you saw him interact with her, you would never know that there is anything weighing on his mind. He has made sure Mara’s life has stayed constantly happy no matter what else we are feeling. Watching Michael and Mara together has been the best medicine for me. It’s impossible not to smile watching them together.

I can’t let Father’s Day go past without talking about the support of my dad through this process. Since my diagnosis, my dad has been traveling back and forth from Chicago to Tennessee to help. He must feel like he lives out of a suitcase. On the weeks he is in Chicago, it doesn’t feel like he is here to visit a sick person. He makes it feel like he’s here for a vacation. He is so strong and calm and peaceful that it makes it difficult to even be scared of what we’re going through. He is so certain that the treatment is going to work that it seems impossible that it wouldn’t. My father reminds me to be patient when I am getting impatient for better results, less symptoms, faster healing. He has the most amazing attitude that it has changed mine for the better.

Crazily, Dad was diagnosed with surface melanoma the day after my cancer diagnosis, and he had a surgery to have it removed. Luckily, it was able to all be removed and he does not need any more treatment, but he had to go through it all by himself because all the attention was focused on my treatments. Instead of being able to be taken care of and get pampered, Dad got his face glued shut and came up to Chicago to make endless trips to and from the grocery store for me. Instead of worrying about his own health, he has made it his mission to find foods that I can eat. One of the most frustrating things during treatment has been losing my sense of taste, and dad has taken it upon himself to find foods that I can get any flavor from. He seems to get true joy from finding ways to make me happy. Dad has also become a champion babysitter for Mara. He changes diapers and feeds bottles without being asked, and Mara adores her Papa Jack.

This coming week is what I consider the test week for recovery since we have not been through it before. It is the first week that I get to stay at home and recuperate rather than go back to the hospital and get attacked by another round of chemo/radiation. So far, I have been trying to be as active as possible, and I am feeling better than I have in past weeks, although I am dealing with a lot of pain in my throat. Without the chemotherapy, my nausea is better, and we are thankful for these small mercies. Also, the hair, nail, and taste bud loss should have stopped since there’s no more chemotherapy. Now I just wait for things to come back. I’ll keep everyone posted as I start to feel more strong. I’ve been told not to expect to feel better right away - one of the doctors described it as turning on a dimmer switch rather than switching on a light, so I’m trying to wait patiently for the dimmer switch to come on. Today, I can taste the coffee my mother just brought me, so that feels like a notch on the dimmer.

Today is my last day at home before going in for my seventh inpatient stay for Round 7. We had some pretty scary days during my “rest week” between rounds 6 and 7. On Thursday, I started having trouble breathing so we had to go to the emergency room, and I was admitted to the hospital. I was diagnosed with a respiratory virus. After several steroid doses, antibiotics, and nebulizer treatments I am feeling much better. Until the virus was diagnosed, it was frightening and there were some scary talks about having to put in a tracheotomy. Fortunately, I did not need anything as drastic as that. I am thanking God for that. I was discharged on Friday night. I am glad they let me go home last night even though I only have a short stay at home before going back for my scheduled inpatient stay.

Our emergency room trip was scary and even though I was frightened about not being able to breathe well, when we were sent into a treatment room, hospital staff members were wheeling out the body of a fireman draped in an American flag. It immediately put it into perspective that whatever frightening thing we are facing, we are fortunate not to be dealing with the difficult things other people are encountering.

Please keep the prayers coming for a smooth Round 7. This week was a good wake-up call as to how tenuous my health is. I’m lucky not to have picked up any viruses before now, and I’m lucky my treatment will not have to be delayed because of the virus. I just want to get through the last round with no more complications so I can start healing.

I have been trying to write this post for weeks, but the chemotherapy makes it hard to concentrate on anything and puts me in a fog, so I’m going to put this here as is, even though I know there’s more I’d love to say.

When I got diagnosed a family friend who had been through cancer treatment told me that I would see God’s hands at work during treatment. He saw God’s hands through his oncology nurses. I see God’s hands at work through my mom.

I called my mom to tell her about my cancer diagnosis on February 25th. My dad was at a meeting, so mom was alone when she got the news. She didn’t miss a beat. Immediately, she started putting together a list of questions about treatment options. Before I had even processed the diagnosis, mom was already getting helpful information from people familiar with the treatment. To this day, she researches my symptoms and helps me verify that everything will go away.

My dad travels to and from Chicago during my treatments because he still has to go to work, but my mom bought a one way airline ticket to Chicago for March 1st. She has been here ever since. She helped me through my first oncology appointments and learned how we do everything for Mara so that my hospital stays wouldn’t be as disruptive. She’s watched Mara while Michael and I are at the hospital, and on days when Michael can be home, she comes and keeps me company during treatment

Since March 1, my mom has done everything for us. She cooks and cleans and makes baby food. She plays with Mara. She cares for our home, our dogs, us. I cannot even start to list all of the tasks and chores she has taken on. It is hard that I cannot do everything in the “mommy” role that I would be doing if I was healthy, but it makes me so happy to see my mom interact with Mara and sing songs to her and feed and dress her. If I can’t do these things, I’m lucky my mom can.

Most nights my mom sleeps on a sofa to be closer to Mara so she can get up with Mara if she wakes. My mom has not complained once about everything she does for us. Taking care of a 10 month old is exhausting but she laughs and talks with Mara all day long. Mara is so lucky to have Nana Sherry taking care of her. My mom has a wonderful sense of humor and a way of making everything more fun and colorful. She knows every song or story a child would ever want to hear.

Most of all, my mom calms me down when the stress of this process takes over and I get scared. She gives me pep talks and keeps me focusing on the positive. She reminds me this is temporary. She does the same for everyone in my family. She is keeping me sane through this. I keep remembering the Footprints story about Jesus carrying us during hard times, but I keep picturing it as my mom carrying my whole family through this.

Please keep my tremendously strong mother in your prayers. I wish I could think of something people could send to her but she says she doesn’t need anything.

Update from Michael:

Camilla “suggested” I write an update and during her treatment (and really ever since we got married) I understand what “suggested” means and will do as I'm told. I will start with the disclosure that I am not as eloquent a writer as Camilla but I will do my best to convey her status as we wind down our week at home and prepare for round four (I'm not sure if it's just me, but every time I say or write "round x" I hear a bell go of in my head and someone yelling "Fight!")

This week has been the best recovery time to date. We're not sure if it's that the mix of medications is finally right, that all the invasive surgery sites have healed, and/or that they slightly lowered one of her chemo doses during round three (ding!) but we really don't care. Camilla is much more present than the first few rounds. We've been able to walk outside and she is able to sit in Mara's playpen. Mara is consistently saying “Mama” when Cam is around so we're calling that her official first word. As the week has progressed, Camilla’s pain has increased, so we’re figuring out the right balance of pain medications.

Camilla is still able to swallow milk shakes, thin soups, and some cereals which I, and all her doctors, are very pleased with. There is such a complex network of intricate muscles and reflexes that 99% of people (including Camilla and me before all this) take for granted when you chew and swallow and breathe. Camilla has to fight through a lot of pain caused by the radiation to get stuff down but keeping those muscles active is very important for her quality of life after we're through with all this cancer stuff. She has lost her voice and is showing some burns on her neck but that is normal from the radiation. We're developing our own basic sign language and the fact that we've been together almost 16 years means I can usually guess what she wants.

The medications she is on leave her in a fog which is frustrating for her in the moment but might be a blessing long term as she hopefully won't remember all the discomfort and pain she is in. Sherry and I were telling her how much better she seems this round but she said she really doesn't recall the first two so doesn't think she's improving, although she is. Also, because the first two rounds were so tough, it wasn’t too difficult to improve.

Our doctors seem confident the treatment is progressing as expected, and they are very pleased that Camilla is putting on some weight (which they say is an anomaly for the treatment she is going through). I'll take a little credit as I force her to "eat" through her G-tube and offer her ice cream throughout the day.

I'll wrap it up there and reiterate the same thanks Camilla has for the outpouring of support, be it notes, food, visits, gift cards, or purchasing things from the Amazon list, we are completely overwhelmed and thankful for all of you. We are keeping a running list of what people have done and are going to need a bigger notebook. Please continue with the positive thoughts and prayers for Cam as we head in for round 4 Sunday and will leave being over halfway through treatment. Ding, fight!

And just like that, my week at home is drawing to a close. Sunday, I’ll check back in to the hospital for Round 3. I had a rough week off - the chemo and radiation cause me to have a lot of mouth and throat pain, and the fatigue is overwhelming. Michael, my mom, and my mother-in-law have been taking great care of Mara and me. Also, everyone’s been so generous and sending care packages, so I’ve been well equipped with all the gifts.

Michael’s devotion is the stuff of legend. He gives me all of my medicines, hooks up my home hydration every day, feeds me through my feeding tube, and even rubs lotion on my feet before bed every night. Today, he washed my hair for me. I would do the same thing for him if the roles were reversed, of course, but with a lot more complaining and a lot less patience.

Mara is doing well. I love being home with her. I can’t hold her for long, because I have a tube taped to my face that she wants to grab and because I’m pretty weak and tired and she’s getting big, but we sit next to each other, and I feed her pureed foods. She’s learning to stand and loves to move around. She’s a very happy baby and she keeps us all smiling and laughing no matter what. A lot of you have offered to babysit or mentioned that you want to come see her. However, we’re keeping her away from people as much as possible, because, if she gets sick, I won’t be able to be around her. Thank you for being so understanding when we’ve kept visits at bay. Even people who have been dropping off dinner have not been invited in, which feels so rude, but it is what we have to do right now.

The most frustrating thing right now (other than not being able to interact normally with Mara) is eating. I have lots of food cravings (I’m keeping a list), but nothing tastes the way it is supposed to because of the chemo, and I have trouble swallowing because of the radiation. The good news is that the taste buds will come back once the chemo is over, and I basically have a private speech pathologist to help with my swallowing in my sister-in-law, Kara. Michael and my mom are eating well with all the food that people have been sending through the MealTrain site, so thank you!

I’m dreading going back into the hospital, but I’m trying to stay positive despite that. I have lots of books and movies (people have been so generous sending them!) to watch during my stay, and I even pulled out an old needlepoint project to bring. We all laughed a lot when I pulled that out and started working on it. Nine years ago I bought a needlepoint kit to make a Christmas stocking for Michael, and nine years later, I’ve only finished about 4 inches of the stocking. Apparently it takes me getting sick to sit down and actually needlepoint the darn thing.

I don’t know how to thank everyone for your support. So many of you have reached out to me. I’ve heard from people that I’d lost touch with over the years, and I’ve been reminded of how many wonderful people I have in my life. Some of you I haven’t seen since high school or college. Please know that your notes and gifts and messages have brought me to tears. On days when I don’t have a lot of strength, you give me the extra boost I need. No matter how bad this is, it has shown me how great my family, friends, and colleagues are. I love you all.

Happy Easter! I had a wonderful morning at home with Mara, Michael, and my parents. We gave Mara her Easter basket, and she ate some peas and carrots (parrots, as my mom calls them).

Then, it was time for Michael and me to head to the hospital to be admitted for Round 2 of chemo/radiation. That’s where I’m writing from now. They just started my chemo, which will stay on until Friday when I get discharged. I get two other types of chemo periodically in between now and then, but I stay hooked up to the primary drug the whole time I’m here. I get radiation therapy one time per day. Sometime I’ll post pictures of the radiation process. It’s crazy. They put me in a giant mask and bolt me to a table.

We’re just sitting here watching basketball. You guys, Notre Dame made it to the Elite 8 (I’m told that’s good). I’m happy for them and all, but I thought everyone was supposed to be praying for me - not for Notre Dame’s basketball team. Lying around with nothing to do during March would be much more enjoyable if I was a bigger basketball fan. I did fill out a bracket. I’m currently 3rd to last in my pool. I picked teams based on which team’s name had the least letters of the word ‘cancer’ in it. It turns out that’s not a great way to do a bracket. I did not think Syracuse would go this far.

Not much else to report. Some parts of the day are awful, other parts are fine. The fatigue and boredom are two of the hardest things, although, as hard things go, that’s not that bad. I spend a lot of time coloring, which is a thing I didn’t expect to say at my age, but it is actually pretty soothing. No need to send more supplies - I have plenty, and they are getting put to good use. On that note, I have been so overwhelmed by how generous so many of you have been. I have wanted for nothing so far. Thank you!

Time for me to go eat. That seems to be how most of these posts end. I wish I had more poignant things to say, especially with it being Easter. Just know that it is not lost on me that this is a season of new life, renewal, and resurrection. I’m finding a lot of comfort in that. I’m finding comfort in prayer. I have no doubt God will get me through this as easily as possible, and this journey is helping me appreciate everything about my normal life. I will be back in that routine soon with a new appreciation for every aspect of it. The things I thought were hard before don’t seem that hard anymore. Seeing some of the people in the hospital has made me realize how lucky I am. Even the hard things I’m dealing with aren’t the worst. Everything is bearable. Someone sent me the poem Invictus (shout out to cousin David!) and the line “My head is bloodied but unbowed” has been in my mind lately. I’m in high spirits and ready for Round 2.

I had procedures last Thursday to implant a feeding tube and infusion port. They went smoothly. However, I thought I'd only have to stay in the hospital for a night and would get to go home again before starting chemotherapy and radiation. Sadly, I was not able to go home between my procedures and my treatments, so I've been in the hospital since Thursday. Chemotherapy starts tonight and radiation tomorrow (Monday). I should be discharged in 5 days for some much-needed time at home.

These last few days have been some of the hardest of my life and it is scary to know I'm just at the beginning. I'm so thankful for my mom and Michael who have taken wonderful care of Mara and me, not to mention Kara and Tom who have stepped in wholeheartedly. I am also so thankful to have seen so many friends who work at U of C while I have been here. The rest of you have been so kind and generous. I know I have not responded to all the emails, cards, and gifts. Please know they are not going unnoticed. You have all brightened these dark days so many different ways. You have no idea.

I'm trying to find something beautiful everyday. Today the beautiful things were a text message convo with my sister about Harry Potter trivia and watching Michael try to sneak onto the hospital scale without the nurse noticing. (Spoiler alert: he got caught). And, of course, Mara is the most beautiful part of every day. Well, I'm getting emotional and it's time for me to eat some vanilla pudding from my hospital tray, so more news will have to wait until later....