1. Matt's coming down with a cold...

Saturday, June 6th, 2009
Matt's parents leave for a fishing trip to Canada. Matt and his sister are in charge of the farm as he starts feeling like he's getting cold.

Tuesday, June 9th, 2009
He starts running a slight fever in the evenings, and he's really tired.

Friday, June 12th, 2009
Of course my mom taught me the 3 day rule: You call the doctor if a fever lasts for more than 3 days. Matt is also sleeping much of the day. So, I ask Matt to call the doctor's office on Friday the 12th. He gets an appointment with the Nurse Practitioner, who prescribed him antibiotics for a possible sinus infection caused by some virus. Matt doesn't really have much of a stuffy or runny nose. Odd. The swine flu and regular flu virus test came back negative. He is supposed to call back in 3 days if symptoms persist or get worse.

Monday, June 15th, 2009
Matt is still running a low grade fever and is very tired. He slept most of the weekend away. So, he calls the doctor's office back. They have him come in again. They decide to run a Mono test and other blood work. Everything comes back negative or indicative of a virus. What virus, we don't know. They send Matt home telling him to rest and drink lots of fluids and to call back in 3 days if symptoms persist or get worse.

Thursday, June 18th, 2009
Matt is still running a low grade fever. He calls the office and they have him rerun the Mono test, which comes back negative again. They still think it's a virus. They send him home.

Sunday, June 21st, 2009 (Father's day)
The kids and I go to Binder Park Zoo with Grandma Margie and Grandpa Roger. Matt stayed home because he's still really exhausted and doesn't think he'll be able to walk all day. But he starts feeling better towards the end of the day. It was kind of like he's getting over whatever virus he'd been fighting.

Monday, June 22nd, 2009 through Saturday, July 4th, 2009 (Independence day)
Matt was feeling decent. Not 100%, but much, much better than he had been. Matt and I put a retaining wall up against the house creating a wonderful flower bed in the back yard on Saturday June 27th. The fourth of July we spent tearing out the basement window and replacing half of the wall (honestly Matt did ALL the work). The window was replaced with one that is designed to remove both glass panes so we can get drywall sheets in to finish the basement. The wall needed to be replaced, because we had a poorly installed patio door on the floor above, which had been leaking for the last 10 years. This spring we had the patio door installation fixed and now that we're dry it was time to get the moldy wall out, before we slap new insulation and dry wall up... Believe me, I've wondered if the mold was causing the fevers and exhaustion.
Matt was working hard that day and was getting really tired... we got done and went to see the fireworks with our family. Sue and Bill came from Chicago and Bill and Dee and the Kids visited from Niles. Mom, Roger, Crystl, Ryan and Anders also joined us.

Sunday, July 5th, 2009
Matt wasn't getting out of bed. When he finally did, hes said: "Honey, I think I'm sick again." I started getting REALLY worried.

Monday, July 6th, 2009
I had Monday the 5th off and called the doctors office early that morning. I spoke to a triage nurse, who said she'd ask the doctor and call back, after I told her Matt was sick again, same as before: Slight fever and tired. When the nurse called back Matt answered the phone. The nurse said to call back in 3 days if symptoms persist or get worse. I was perturbed.

Tuesday, July 6th, 2009
Matt is still feeling lousy and running low grade fevers. I went to work and called the Doctor's office from there. I got the nerve up to say: "Why are we waiting 3 days? What are we going to do in 3 days that we can't get started on today?" The nurse said she'd talk to the Doctor again and would call me back. Yes, we've got an appointment. I met Matt at the doctor's office. He was going to have more blood work run. The doctor was trying to figure out what Virus.

Wednesday, July 8th, 2009
Called the office from work. All results negative or indicative of Virus, no bacterial infection. However, he was positive for having had the Epstein-Barr virus (EBV) at some point in his life - not now. Epstein-Barr is associated with Mono.  Infectious mononucleosis, or "mono", is an infection caused by the Epstein-Barr virus. The virus spreads through saliva, which is why it's sometimes called "kissing disease." Mono occurs most often in 15 to 17-year-olds. However, you can get it at any age. Symptoms of mono include Fever,Sore throat, Swollen lymph glands. Sometimes you may also have a swollen spleen. Serious problems are rare. A blood test can show if you have mono. Most people get better in two to four weeks. However, you may feel tired for a few months afterward. Treatment focuses on helping symptoms and includes medicines for pain and fever, warm salt water gargles and plenty of rest and fluids.
BUT, Matt doesn't have it now. We have the follow-up appointment on Friday July, 10th.

Thursday, July 9th, 2009
Matt was still running low grade fevers and had now started sweating a lot at night. A LOT. We'd started covering the bed with towels, since he'd soak trought the sheets to the mattress. His fevers hadn't been running very high, but reached 102.8 that night. Between 11:10pm and 1:30am I found him talking in his sleep five times. Each time completely unrelated to the previous.
"I just feel like there are so many car seats floating around between us."
"What? The shingles... on the house - you know watcha'ma call'ems.. on the roof"
"I'm not thinking differently"
"Every time it's different... hm, every time it's different."
"Headphones"
...needless to say, at this point I'm scared. Matt has a natural tendency to talk in his sleep, but usually it's no more often than 2-3 times a year. Not 5 times in one night. I had him take his temperature every once in a while and it never exceeded 102.8.

Friday, July 10th, 2009
We went back to the Doctor's office. I had scheduled the appointment for 10:30 am so I could go to work and Matt would have plenty of time to get up and make it to the Dr. office on time. He wasn't moving as fast anymore. He was exhausted. When we got there, we were informed that we'd missed the appointment with the Doctor which had been scheduled for 8:45am. I was pissed. I knew exactly why I chose the later appointment and that I did. Anyway, the Doctor wasn't available because he was on break now. But, we could see the nurse practitioner. I collected myself and replied: "My husband has been sick for five weeks now and you want me to see the nurse practitioner?" (Yes, I wasn't very nice and regret I ever said this. You will see why in just a moment - Amanda, if you ever end up reading this I want you to know I am sorry!). The lady at the reception said she had an afternoon appointment with another Doctor. Anyway, I figured that as long they had the results from the blood work from Tuesday, she could give us those. We were taken to a room and sat there for ever. Matt was not feeling well. I figured we were waiting so long because we'd missed the scheduled appointment and now they are just trying to squeeze us in... That was not the case. Finally, the nurse practitioner Amanda walked in to the room. She apologized for letting us wait so long, but she figured that the last thing we needed today was to see another doctor. So, she had called a meeting and had every doctor and nurse practitioner that had touch Matt's file in the last 5 weeks sit down in one room and discuss what they knew and how to proceed. I felt like crying... finally!!! (At this point I had even tried switching doctors cause I didn't feel like we were getting anywhere, but Matt's dad's Dr. was booked through August for new patients...) Anyway, the doctors decided to collect a stool sample to check for a parasite that is sometimes found in well water, they took a urine sample (it was the color of iced tea), and ordered a TB test, a chest x-ray and blood work for Lyme disease and West Nile. They were stepping it up. They even put a call in to the Center for infectious diseases in Grand Rapids. The doctors were searching for anything that could cause a "chronic fever of unknown origin". I told Amanda about Matt talking in his sleep last night and said: "I know I am being paranoid, but could it be a brain tumor?" Amanda said "no". If he had a tumor in his brain that was large enough to cause a fever, he'd be in a coma. But she reassured me that at this point it's not paranoia it's patient advocacy. She asked if we could think of anything else... Tests later: Matt had Billirubin in his urine, strange because his liver function was good according to blood work. His kidneys: good. Matt was the healthiest sick person!
His chest x-ray was clean. His lungs were fine... and then they ordered the CT scan for that afternoon at Holland Hospital. Amanda told us: "You have the right to know that we are looking for cancer, but it is very unlikely, we are not expecting it." Ugh. That was the first time we heard anyone say the word 'cancer'.
Matt had to drink a BIG jar of barium right after we left the office, had to go home for a stool sample and drink another BIG jar of barium before heading back to Holland to the hospital for the CT scan. I went to work until it was time to meet up with Matt at the Hospital. I felt like I was in a daze... Matt is sooo sick and now they are talking about cancer? Anyway, got to go do this now. It feels good that we have some momentum finally. The CT scan runs uneventful. Except, that while Matt was having the abdomen and pelvis scanned the Hospital was waiting to hear from our insurance company because the Dr.s just called in a chest CT as well. CT's are very expensive so they want to make sure the insurance will cover it. So, the doctors are still thinking about Matt's case, even after we left the office. We do not get results back right away. Amanda calls that evening at home explaining that they found enlarged lymph nodes in his right armpit and an enlarged spleen... again signs of virus or infection. But, now they are going to schedule us with a Surgeon to do a needle biopsy of the lymph node. They are still moving ahead with the Center for infectious diseases, though.


Saturday, July 11th, 2009
Amanda calls telling us they got in touch with the surgeon who doesn't know his schedule, but who wants to see Matt Monday morning. His office will call us on Monday morning to let us know when. This sounds urgent. I start sleeping in Hailey's room because Matt is sweating sooo bad now. He changes the towel, sheet and mattress pads during the night now.


Sunday, July 12th, 2009
Just waiting for Monday.

Monday, July 13th 2009
We get the call from Dr. VanWylen's office and are seen early that morning. Dr. VanWylen now is able to feel and even I can see a lymph node above Matt's collar bone. He moved it around just under his skin. Amanda did not on Friday. That was strange. Dr. VanWylen tells us he'd like to remove a whole lymph node. Right now. Unless, Matt would rather want sedation instead of a local anesthesia. (note here: Matt almost fainted during Sylvia's delivery via C-section...) Dr. VanWylen thinks it could be Lymphoma.
Matt and I decided to do it right away instead of waiting to have it scheduled at the Hospital which would just prolong things. I was so proud of him. I got to sit in the surgery room with him. The lymph node was the size of a large olive and light pink. It was sent to Holland Hospital where it would be prepped and then depending on results sent to Mayo Clinic for second opinion we should know something by Wednesday and get final results from Mayo by Friday we were told. (Everything takes longer than you'd think - beware.)

Tuesday, July 14th, 2009
Nothing new... at this point the Dr.s office is waiting to hear back from the biopsy before proceeding with the Centers for infectious diseases. That's not reassuring.

Wednesday, July 15th, 2009
Nothing new.

Thursday, July 16th, 2009
Nothing... I call both offices neither have any results. Dr. VanWylen calls us in the afternoon. He says he has a preliminary result from the pathologist that it could be Hodgkin Lymphoma - Lymphocyte Predominant... but that it could still change. We are still waiting to hear back from Mayo Clinic. Matt has cancer. Now we're just trying to figure out what kind.... There are two types of Lymphoma: 1. Non-Hodgkin Lymphoma, which has like 30 subtypes ranging from aggressive to not at all aggressive and 2. Hodgkin Lymphoma, which has I believe 4 subtypes, also ranging from more to less aggressive, however all very treatable. 'Very Treatable' what does that mean??? I can't begin to start learning all the different types and what the outcomes might be, so I decide to let it go for now... we'll find out soon enough.
Matt and I take the rest of the day and go see Harry Potter the Half blood prince (it just came out yesterday).
I have a message on my phone as we get back to the car... Addie left a voice mail. She's great - she knew just what to say: "Karin, I know you're going to have times you'll just need to be sad, and times you'll need to get way. I'm here for you." Matt looked at me with tears in his eyes and said: "She can be such a pain in the butt... but she's a REALLY good friend." Then he smiled at me, as I tried not to cry. Reality was starting to sink in.
At night, Matt is still doing really bad, fever, headaches, night sweats, general malaise... I wonder if he's getting depressed. He's been feeling like crap FOR EVER...
For GOOD info on Hodgkin's Lymhoma: http://www.nci.nih.gov/cancertopics/wyntk/hodgkin/page2

Friday, July 17th, 2009
nothing new.

Saturday, July 18th, 2009
I'm worried. Can't sleep. Matt's doing worse. Last week I bought hospital mattress pads. The cotton kind that have pink plastic backing, so Matt likes to lay on a towel so the pad doesn't make him sweat more. But towels are bumpy so he has the sheet he sleeps on over the towel. Matt lays on one half of or bed and rolls onto the other half, half way through the night. Then changes the top layer and sleeps into the mornings. I do laundry everyday and have been washing, sheets and towels, and waterproof mattress pads and pillow cases and pillows every day. Matt seems soooo sick. I call the doctor after hours Saturday afternoon and start crying cause I don't know what to do. They tell me to alternate Tylenol and Aleve it may help with fevers. I'm frustrated. Why can't they do anything to make him better? He seems like he can barely walk. I put the kids to bed and go to Sam's club and buy Gatorade and Ensure. Matt has lost about 17 lbs in the last 6 weeks. He looks so pale and skinny. My mom has been great helping out with the kids and giving me space. She knows I can get funny when I'm emotional. Matt's parents have been wonderful. Jim called this morning and talked to me for half an hour this morning... about Benny and how he needs to show him how to do stuff while they're hosting the conference next week. It was nice. I know he's worried and it felt nice that he called and talked to me. We are all hanging in limbo. Mary has to be worried sick. I can't imagine if it were my child. Not that Matt being my husband makes it any better/easier... but your child is your child. It has to be difficult.

Sunday, July 19th, 2009
Bryon and Nicole come over with the kids. Matt is feeling slightly better. I think Gatorade and Ensure is helping him get hydrated and some energy and nutrients. Matt has lost his appetite. I can't get over how sick he feels. I think it was good that Matt was able to spend some time with Bryon. Matt doesn't talk much when he's feeling lousy. So, I'm not sure what he's thinking and I can't begin to imagine. I feel like crap emotionally and I'm not even the one with cancer - who knows what kind of cancer - not that it really matters when you're trying to wrap your mind around the fact that you or your loved one has cancer.

Monday, July 20th, 2009
Have I mentioned how awesome my boss has been? Well, all I can say is a million thanks!
No news. No news. I called both the Doctors office and the Surgeons office. No news! Matt is sooo sick and we're doing nothing.

Tuesday, July 21st, 2009
I am upset. I can't get any answers. We know it's cancer, why haven't we scheduled an appointment with an oncologist??? What are we waiting for? Matt looks deathly ill. A colleague at work has me looking at cancer centers in the area. He has experience with this. So, I find a phone number for a social worker at Lacks Cancer Center at St. Mary's Hospital in Grand Rapids. I call and leave a message. I really didn't know what I was expecting. I just wanted someone to tell me how long this should be taking. Why no one is taking care of Matt? What should I be expecting? Should I be switching to Doctors in Ann Arbor???? Damn.
A couple hours later I have a social worker returning my call. She said I had called the financial advisor and that he gave her my number. Wow. She asked me what was wrong. I told her about Matt and how he seems so ill and I'm not getting answers and no one is doing anything. He's not doing well. She told me to take him to the ER at St. Mary's. They can check him out. If he's okay they can send him home. If he's not, they can take care of him... I liked her. She said, I know my husband best and that I should listen to my gut feeling. I left work 20 minutes later. Matt was willing to go to the ER. That was unexpected. He must be feeling really bad if he's willing to go! On my way home the Surgeon calls. I pull over and park the car. He has news. It's Hodgkins Lymphoma - Nodular Sclerosing (different than initial diagnosis, still very treatable). His office will call me back with our next appointments. I told him about my conversation with the social worker and what she said. He told me that if Matt's still eating and drinking not to worry and he would not take him to the ER they couldn't do anything. Now I was confused. Should I take him or not? Who do I call? I try calling Mary but she's hosting the conference and she's not picking up. I call Bryon, he has experience with cancer... He tells me to take him in. He thinks as weak as Matt is now he needs to get his strength back before he starts chemo. Okay, I get home and Mary and Becky are at the house sitting with Matt. Good! They agree, I should take him. He wants to go, but is hesitant. I get a call from the Surgeons office with an appointment for NEXT Tuesday July 28th!!! Are you kidding me? Another week? I'm definitely taking him now!

Oh, and we are scheduled for Matt to get a Port on Friday the 24th... whatever that is.