Better a bald head than no head at all. -Austin O'Malley

T's hair has started to go. Last night I buzzed his head and now his beard is longer than his hair, which is fun. We've read that in certain circumstances chemo patients lose only the hair on the dome, but it seems as though his beard is also falling out. Picture an eyebrow-free Yul Brynner; that's the look we're going for. To the blazes with Nefertari...if anything can top our canceled Halloween wedding plan (Frankenstein's monster and the bride), it's Tim as pharaoh and Charlton Heston for me.

We traveled to Neponset to see my parents and pick up a new used chair this past weekend. My uncle and dad were thoughtful enough to load it in the van and our friends Mike and Becca helped me move it upstairs, graciously accepting farm fresh produce as reward for their toils. As anyone who has been to our place knows, our couch and love seat have seen better years, possibly decades. The new addition is a lift chair that almost completely reclines, so when he starts the intense treatment next week and he must have the chemo bags attached to him at all times, Timberly will have an alternative to the bed to rest in and remain comfortable. See the picture and visualize it in dark green. It stands him almost completely for when he's feeling weak. It's pretty rockin'.

T has finally gotten his appetite back, almost just in time for the chemo to start. This week we are stuffing him with full fat and calorie foods, hoping to put on a little of the weight he's lost before he starts feeling cruddy again. A side effect of his cancer, then, is that I have gained 4 pounds, one more reason why it's good that I no longer need to worry about that wedding dress! I baked Tim an apple pie last night with apples from the farm and we're going to eat it with ice cream when I get home from trading cars with my mom this eve. It required the use of 3 sticks of butter and a full cup of sugar, so this baby better be as good as it looks and smells. While it's far from a superfood, I think we'll worry about getting back to those when he's eating more selectively again. For now, we chow down!

Fungus Factories

Today, T and I went in for him to get some blood work done. His white blood cell count is just in the normal range despite the chemo, which is a plus. It is considerably lower than before the chemo, which is expected. We'll find out from Dr. G exactly what that means next week, but the nurse who works closest with him said it is a good thing.

While we sat in the lobby, a man wearing street clothes and a surgical mask (presumably due to a compromised immune system) walked in and asked the receptionists for a wheelchair to take him to his car. He happened to leave at the same time as us and as we were waiting for the elevator, he informed us that we should wear shoes in a hospital. He asked if we were "trying to make a fashion statement," at which point we discerned that we had unconsciously agitated him by wearing flip-flops to our appointment. He called our feet "fungus factories." The security guard pushing the wheelchair rolled his eyes and we waited for the next elevator.

New news

We heard from the nurse today about the results of the bone marrow biopsy and Tim's marrow has been taken over by the lymphoma. This means the cancer is more aggressive than the doctor had initially thought and it completely changes the treatment for T. To borrow from Vonnegut, so it goes.

The chemo treatment will still occur in one out of every three weeks, but instead of going in for a few hours during one day of chemo week, he'll be at the hospital every day. Generally it will be on Monday through Friday, but for the first treatment, we'll be going Tuesday through Saturday (Labor Day threw us off schedule). T is going to have a PICC line inserted into his arm on the first day of the new treatment. This will stay in throughout the regimen, hopefully until November or December. On the first chemo day of the week, he will then get two bags attached to the PICC line, each with a pump. One of the bags will have two types of chemo in it and that will stay in place through the entire week. The other bag will have another type of chemo in it and will need to be changed every 24 hours by the staff at our hospital. This entire process will be done with him as an outpatient, so while he does need to be at the hospital daily, he will not need to stay over. On the final day, Tim will have both bags removed and will have a fourth type of chemo that will only take about an hour to run. Then we're footloose and fancy-free for four days!

In each of the two weeks between chemotherapy, Tim will need bi-weekly blood or platelet transfusions. The number may go up or down, depending on how he responds, and we will be doing this on Tuesday and Friday. The transfusions will require 6-8 hours in the hospital and they will use blood banks as sources. I was concerned about needing donations from relatives for the platelet transfusions, but apparently as long as we all visit our Red Crosses like the upstanding citizens we are, he'll have access to plenty of the necessary fluids. My ignorance of the transfusion process reared her ugly head with that concern.

This almost feels like starting over. There is good news in all of this, though. We are not sure yet, but they may have to do fewer of these treatments than he would have had for the R-CHOP (original regimen), so he could be done earlier than December, but we are not getting our hopes spectacularly high. I believe the number of treatments depends on how he responds over time, something we need to clear up with the doctor before getting excited. More good news is that Dr. G is confident, in his words, that this regimen will rid T's body of the lymphoma. We have an appointment to get more information next Friday and we'll get started with the new chemo on the day after Labor Day.

So every week in the near future, Timmeh (and I when I can) will be in the hospital for at least two days. We are trying to figure out how we will schedule all of these appointments while I work full time, have class two nights, and am expected to observe a classroom for two days of the week this semester and Tim works part time and has class two nights per week. Luckily, we have family 'relative'ly close in proximity and some wonderful friends who have offered to run carpool for T when we need them. Plus, my amazing boss and lovely coworkers have been nothing but supportive of us and have offered more understanding than I could have forseen. Our cup overfloweth.

"This guy!"

Birthday Parties and Dog Beaches

Gorgeous flowers from last week from our friends Elif and Crystal. Thanks, ladies!



This weekend we went to see Timmeh's parents in Rockford on Friday, picked up a side of Hana, and went to a birthday party on Saturday (HBD again, Dacky!). While it was good for T to be out with some friendly faces, he was quite petered out and we went on our merry way after only about an hour. Little did we know, the party was not going to be the most interesting part of the evening...

We went home and Tim was completely exhausted, so Hana and I watched a movie (Ponyo on the Cliff by the Sea, which I def. recommend) and he trotted off to bed. Since he started his medication a few weeks ago he generally gets up about every hour and a half to two hours. It was no surprise, then, that halfway through the movie he was up and around the apartment only to go back to bed after a handful of minutes. What was curious was that he was up three additional times in the following hour. When the movie ended, I trudged to bed only to find T freaking out in the bedroom. It's a part of the cancer that his skin itches a lot, but when I walked in he was clawing at himself like a madman. Let me tell you, this is not something one witnesses and thinks, "Hm, I'd really like to hop into bed with that!" Cue the horns, we have a new symptom...time to find a solution.

This past week, T's aunt sent us a natural brush with very stiff bristles to use on his skin, so I broke that out and started to go over his body. Forgive me for my farm girl revealing herself, but it was a bit like brushing our pigs to show them at the 4-H fair (Sorry, honey!). After the brush, I rubbed on some Aveeno lotion with oatmeal. After a second coat, T thought he'd be able to sleep, so I settled in and was out within 3 minutes. Within four, he was scratching again. At this point, it's likely been 20 minutes and it's around 12:30 in the morning. T decides to take a shower and I was so, so tempted to roll over and fall back asleep, but with my mother's voice in my ear, I rolled out of bed, got dressed, and went on a quest for a 24-hour Walgreen's, not a difficult thing to chance upon in Chicago. Poor Hana trying to sleep on the couch probably thought we were both slightly insane.

I let Tim know where I was going and spent a good 20 minutes at Walgreen's trying to find something to help. T's mom had suggested Gold Bond and the pharmacist Benadryl, so I got some cream of both and Gold Bond foot powder. They didn't have regular Gold Bond powder, so our bedroom, our bed and both of us smell of foot powder...acquaintances, ye be warned. I can only imagine what the cashier and his three buddies standing around the checkout desk thought when I came up with my purchases at 1 a.m. When I got home, we started the application process over again, this time with Benadryl cream and Gold Bond powder instead of lotion, and we were able to finally get to sleep around 1:30 or 2. We put our brilliant minds together and realized that Tim should not mix non-prescription Tylenol-PM with all of his medicines. Who knew? Now we do.

Today we got up and Hana helped me run a bunch of errands. We later put her on a train towards Rockford and went to the Montrose dog beach to watch the pups play in the water. We couldn't have picked a nicer day. T could breathe easier near the water, so we stayed there for a few hours. He napped intermittently and watched the pooches play and I got through as much of my book as I could before school starts next week. It was a great day to bring an end to our summer break. And back to school we go...


Thanks for the cards, everyone! We're going to put them on the wall next to the bed (to smell like foot powder, too!).

Upswinging

Yesterday was definitely the worst. He drifted in an out of sleep all day, which was nerve-wracking for me at work to not be able to call and check-in lest I wake him. Tim ate hardly anything and only when coaxed. The entire 9 hours I was out of the house he had only a glass of seltzer water. Following advice I found online, I made a very bland chicken noodle casserole and served it at room temperature for him. He ate about a bite every five minutes, but finished his plate so that he could take his pills. He reported feeling much better after food.

Today he's all good, though he was initially nauseous when he first woke up to take his first set of a.m. pills. Those he has to take on an empty stomach, so he goes back to sleep for a couple of hours before taking his second a.m. pill set that must be taken with food. When he woke up the second time, he inhaled a grilled peanut butter and banana sandwich and was up and around for a while before crashing for a nap about an hour ago. It is such a relief to see him feeling better.

I'm not sure if the next chemo sessions are going to get progressively harder, which is something we're going to ask Dr. G about, but at least now we know a little more what to expect. His future sessions are going to be scheduled for Thursdays, so if the worst days are always the second day after I'll be with him the entire day on Saturdays to get him to eat and run out for anything that he needs. The timing will work out perfectly!

Some of his symptoms are subsiding, as Dr. G said we might expect. He doesn't have night sweats any longer, which our pillows and sheets are thankful for, and the coughing is much better. I'm picturing the tumor shrinking away in his chest, something that is likely inaccurate at this point, but makes me feel better regardless. The tumor is pictured below at Tim's suggestion, along with a dazzling view of our neighbor's air conditioner. This is the one from Dr. B's office. The tumor is on his right side, so it's just below and to the left of the white dot above the air conditioner. I'd highlight it, but I'm an absolute dolt when it comes to editing pictures.

Chemo - the day after

Today was definitely more difficult for Tim. He woke up around 7:30 with nausea, stomachache, etc. I was able to work from home again, which was very helpful. We had some pill confusion, but got it sorted out and T napped most of the day. He was able to eat a little and was feeling a bit restless by the time his sleep quota was met. We haven't been out of the apartment outside of appointments for a while, so we went to see District-9 in the early eve. I found it funny that he was able to suppress the old cancer-cough for 2 hours while the elderly gent behind us couldn't stop from kicking T's chair and commenting on each scene, but we thoroughly enjoyed the movie despite. When we came home, I made him some sauteed spinach and chicken for din-din. He ate it all and took one of his sleeping pills for the first time and is about to be out. Hopefully he feels better tomorrow...

Tim v. Chemo - round 1

It is amazing to me how quickly new experiences can become normal. We went in to the andrology laboratory today and then to T's first round of chemotherapy. Two hospitals in one day, ew. Thankfully Tim is feeling well tonight, watching his beloved Cubs likely lose another one. He has so far not experienced any nausea or pain, just a general feeling of tiredness. He decided after chemo that it was imperative that he have a chocolate cake shake from Portillo's, so he was able to eat just after the treatment. He also had some garden-fresh tomatoes (Thanks, Mommala!), an avocado-tuna salad and some bean and kale soup. No worries, moms, I'm making him eat his superfoods!

Chemotherapy was a lot different than the Rotuxin treatment. He was sitting up in a chair fully dressed this time instead of in a bed in jammies. The nurse put on a full gown, face mask and gloves and pushed two enormous syringes of bright red fluid through Tim's IV. There were also two bags of fluids hung, plus some saline. The whole experience took about two hours, but that included picking up his medicine and the explanation of what we should expect for side effects. Next time should be shorter for the chemo, though a longer stay because it's at the same time as the Rotuxin.

The social worker also came in today to talk to us for the first time. As anyone who has met Tim already knows, he's not exactly one who tends to open up, but he is one of the most amiable people I know. It was slightly amusing to hear him trying to balance politeness and reservedness while talking to the social worker about what he's going through. She might have more success with getting him to open up without me there, so next time I'll leave the room when she arrives.

That was our day and it was a long one. Only five more chemo treatments to go, so that's sending us off to bed with smiles on our faces!

The Big C

We went to the oncologist, Dr. G, for the first time on Wednesday, August 12. Dr. G told us that Tim has large diffuse b cell lymphoma, which has a 65-70% cure rate. He said the percentage of people who do have success with the treatment are completely free of the disease, that it isn't likely to reoccur when we beat it. Tim has chemotherapy once every three weeks for the next 18 weeks and we are going to see how he's responding from there to determine if any other treatment is necessary. So with any luck, he'll be cancer free sometime in January.

His treatments began the following day, Thursday, August 13. Though this type of cancer is very treatable, it is also very aggressive and they started as soon as possible. His usual treatment will be R-CHOP, which is an acronym for 5 different kinds of medicine. The R and the P are Rotuxin and Prednisone. He started the Prednisone, which comes in the pill form for T, on Thursday morning. He takes four of the pills in the morning and the worst side effects are that they make him feel a little jittery, which is why they told him to take them in the morning.

Friday was the first time for the Rotuxin, which is distributed by IV, and Tim sat in a chair for 4.5 hours getting the medicine. Evanston hospital has wireless internet, so I was and will be in the future able to work from his bedside, which is clearly awesome. The nurse, Colleen, was very cheerful and kept popping in to his room to say that he was doing great. While some patients have adverse reactions that slow down the treatment, T was fine and he got through with the IV sooner than expected for his first time. He was a little loopy from the Benadryl that they gave him and thus thoroughly enjoyed both The Journey to the Center of the Earth (2008 version) and Get Smart . There was a minor rant somewhere in there about how the first movie undermines a child's education by misrepresenting scientific fact, but I tuned that out after about the first 45 seconds. Today, he's feeling fine.

C, H, and O from R-CHOP are all chemotherapy drugs, which he begins on Monday. They only take about 1/2 hour. In the future they'll do it at the same time as the Rotuxin, but this time the appointments were split.

Tim may lose his hair, including possibly his eyebrows and eyelashes. So if next time you see him he looks like Sean Patrick Flanery from Powder, don't be surprised! He is already breathing a little bit better and the doctor said he should feel the positive effects of the chemo by Tuesday or Wednesday. We have a bumpy road ahead, but we're geared for the fight and ready to go!

Hey, wha happen?

For those of you who are unaware of the back story, this one goes out to you. Tim has had a cough since around March or April of this year. He had complained about it occasionally, but mostly just to say that he was getting older (29 is ancient, right?) and could no longer complete tasks he could easily do in his dashing youth. I kept nagging at him to go to the doctor and finally one Sunday he agreed because he was getting out of breath. The following morning I made an appointment for Tuesday, July 28. Fast forward to doc's office.

Our gp (general practitioner), Dr. B., was very nice when we came in, but it was clear that he did not think it anything serious, so I was feeling relieved and I think Tim was as well. He sent us down for a chest x-ray just to be safe (shout out to Dr. B on that one!) and T went in to get one. He came out about 20 minutes later and said we could go, but the radiologist suddenly came out after us and informed us that we needed to go up to Dr. B's office again. Scary. We followed her up and sat in the waiting room for her to show Dr. B.

2 years later (or 5 minutes, who can tell?), the gp came and took us into his office. He showed us the x-ray and pointed out a mass in Tim's chest on the right side, just above and next to his heart. He told us it looked like lymphoma and it was serious. We were to go downstairs again and see if we could get in for a CAT scan ASAP. Downstairs we went.

We came back two hours later for the chest CAT scan, the following day for bloodwork. I left for vacation (perfect timing, right?) and Tim's close friend took him to the biopsy of his chest on Friday. We got a definite 'yes' on lymphoma from the gp on the following Monday and went in for a PET scan on Thursday. The next Monday was another CAT scan, this one of his pelvic area, and we went to see the oncologist, or cancer specialist, on Wednesday, August 12. Enter Dr. G...cancer has officially been diagnosed.

Welcome!

Welcome, friends and family! Thank you for visiting the blog and for your concern about Tim. For those of you whom I have not yet met, your author and guide through this journey is Molly, Tim's betrothed. T suggested I write a blog to keep everyone informed about his cancer course and I will try my best to keep it up! We do not want to divorce ourselves from those we care about, but emailing or calling everyone for updates after appointments is proving not feasible already. Keeping our friends and extended family in the loop without fear of carpal tunnel or hoarseness, then, is our main objective with this blog. If you want to call, we'd love to hear from you. Don't be offended, however, if you don't hear back for a week or so; if you're worried, check the blog. Hopefully I won't have fallen behind on my duties. That said, let's get started!