Halloween 2010

We are so fortunate to have a wonderful photographer, Cori derksenphotography.com who offered to do free Halloween mini-shoots. She did short little photo shoots all day last Friday for all her regular clients for no charge and released the rights to the photos. She had yummy treats for the kids and the adults, and it was a fun way to start celebrating Halloween. Jenna started out a little shy but as soon as Cori pulled out the candy, she was all smiles. I can't believe how old she looks. Our baby doesn't look much like a baby anymore.

the wait

Pat's surgery was scheduled for Friday September 3rd. It seriously took forever to get to that day. We were so ready to get it over with and get moving on a treatment plan. We had accepted that it was very likely going to be lymphoma and we were ready to start treating it. I had a few good long cries and then I sucked it up and decided I better start thinking positive. I'm not sure if Pat did the same or if he was just positive the entire time. We had some amazing conversations late at night while laying in bed. We had wonderful moments spent together in prayer. I felt us growing closer, and I knew whatever happened our marriage would be stronger. It was one of the defining moments in our marriage.

We had to line a few things up in preparation. The most important of those being sperm banking. We knew that chemo would pretty much render Pat sterile and so we got everything in order to bank sperm for our future. These were calls I never expected to be making. Pat was very good natured about the whole thing and managed to crack quite a few jokes even whilst standing in the fertility clinic waiting room.

One of the other things that seemed really important at the time was getting a spare room all set up. I was nervous that we would be spending a lot of time away from home and that when we were home we were going to need extra help with Jenna. I wanted a comfortable place for our parents to stay. We had an extra bedroom that we affectionately referred to as the hoarder room. Truly, that's exactly what the room looked like. We always kept the door shut and it was essentially full of all kinds of things that we didn't know what to do with. I re-organized all of it and either sold it, donated it, or put it in plastic bins, which now reside in the garage. We decided that this bedroom would eventually become Jenna's bedroom and so we painted it pink and bought a full size bed. Once the room was organized and all set up, I felt better.

We spent as much time with Jenna as possible. We went to the park and the zoo, and stopped enforcing such things as bedtime. We spent a lot of time with our family and close friends. I was very concerned about the fact that if Pat was going to go through chemo his immune system would be so weak and unable to handle visitors. I wanted him to enjoy the people he loved as much as possible. We ate yummy meals and didn't skip out on dessert.

As dramatic as it sounds, the way we both viewed our lives changed so much during this time. We said things like, when this is all over, we are going to... We realized that waiting for the perfect time to do things like take a family vacation, or expand our little family, was a luxury we shouldn't take for granted. It's so cliche to say things like life is short, or you never know when your time is up. Logically I know those statements are true but honestly I still make all these elaborate plans for the future. All the sudden, I was faced with the fact that the future didn't look at all like I had planned.

The Patch

This Saturday we took Jenna to the pumpkin patch. It is a really fun set up with rides, vendors, entertainment, a haunted house, and of course, pumpkins. We went last year and had a blast and this year the owner expanded his space to include even more attractions. This past Saturday was a special day at the patch where the owner was donating 100% of the proceeds to our local Ronald McDonald House. For 10 dollars, Jenna got unlimited access to the rides. We went down this giant slide quite a few times, and had she had it her way, it would have been many more times. It was 90 degrees on Saturday so I didn't dress her in her long sleeve pumpkin shirt but oh well. It was a really fun day for us.

Daddy and Jenna on the little train

Family self-portrait on the spinning strawberry ride

Jenna's first roller-coaster. Seriously tiny little cars. No way anyone taller than me could squeeze their legs into that thing. Seriously.

One of those tilt-a-whirl rides. It went forward and backward. For a few seconds I considered that maybe Jenna wasn't ready for this, but she laughed the entire time.

Sweet little face on the lookout for the perfect pumpkin.

She found it!!

What a cheese this little girl is. I love her squinchy, cheesy grins!

Dr. Cunningham and trust

So the day comes for us to go to the surgeon. We had already been told that we would wait a long time because we were squeezed in on his schedule. We waited 2 plus hours, which I was surprisingly okay with. I kept telling myself it was going to be worth it. Boy was it ever.

Dr Cunningham walked in, shook each of our hands as he introduced himself, and then sat down and read Pat's chart. Seriously, we sat in silence as he read through everything, and thumbed through all the papers. Pat and I kept looking at each other because it was kind of a long, awkward silence. Finally, he peered over his glasses at Pat and said, "so basically you had some weird blood levels, your doctor sent you to an oncologist who found out you have a large spleen, and now you're here to talk to me about removing it." Ummm....yep that pretty much sums it up. He looked older than I remember him. His hair, once salt and pepper, is now white, and there's much less of it. Still seemed pretty mellow.

He then proceeded to read each of the reports out loud to us, explaining each as he went. He started with labs and told us how Pat's red and white cells, as well as platelets were remarkably low. Yep, knew about that. Then he started reading the CT scan, "spleen remarkably enlarged, with multiple lesions throughout." Wait...what??? I quickly cut in and ask him to repeat what he just said. He does and then looks at me waiting for a response. I tell him no one has told us about lesions. He nonchalantly says, "oh. Well I'll keep reading then." He then mentions that there are 2 enlarged lymph nodes near the spleen and two enlarged lymph nodes lower in Pat's abdominal cavity. He pauses and looks at me and I tell him how that is also new information to us. He then moves on to the the PET scan and tells us how the spleen reacted as well as the four lymph nodes. We sit quietly. Dr Cunningham closes the chart and turns his chair to face us.

He explains that all the information we need to get a true diagnosis is in the spleen. He explains that he feels that the spleen needs to come out. Pat asks if they could just biopsy it. The doctor says well we could but I think it really needs to be removed. Based on the scans it seems very diseased and should be removed. He explains that he will remove it through 4 incisions and that Pat will have to stay in the hospital for 1-2 nights. I ask about the lymph nodes and he tells me that the only way to get to them is by cutting Pat completely open and removing most of his organs, and that it isn't worth the risk when the spleen will have all the answers we need. He then asks if we have any questions. So I go for it again. I ask him based on all the reports he just read, does he think it is lymphoma. I totally expect the same dancing around the topic answer that I got from the oncologist. So I'm totally shocked when he instead says "yeah, most likely."

Wow. I thank him for his honesty, and then apologize for being so pushy and direct. He gives me a wry smile, and dismisses the idea completely. He then looks at us and explains that a doctor-patient relationship depends completely on trust. If we don't trust him it's never going to work. Therefore, he has to do his part to make sure we can always trust him and that starts with him being as open and honest as possible. He tells us he won't ever hide the truth even if the truth sucks. I am all at once completely at ease with this man operating on mine.

He then goes on to explain that surgery will be scheduled 3 weeks out. 3 weeks!!!?? Before I could protest, he quickly explained that while you don't need your spleen to live, not having one leaves a person susceptible to 3 main illnesses. Pneumonia, haemophilus influenza, and meningitis, and as such, it would be best to immunize Pat against these 3 diseases prior to surgery. He tells us that the body then needs about 3 weeks to build up the antibodies and then we are good to go. It is best to give the immunizations while the spleen is still in the body and the immune system is intact. He assures us that even in the case of cancer, 3 weeks will not matter, and the risk of him contracting a bad case of pneumonia in this valley is high. I unhappily agree with the plan and so surgery is scheduled for September 3rd.

Pat's 30th

So it took 10 days to see the surgeon. We were seeing Dr Cunningham who I sort of remembered from my first nursing job at the hospital. I remembered that he was nice and mellow and always treated the nurses kindly (hugely important in my eyes). I told my boss, Dr D, who we were seeing, and his response, "he's the best...the only one I'd want cutting on me," made me feel relieved, and much less irritated about waiting 10 days to see him. Somewhere in the middle of these 10 days was Pat's 30th birthday. It was really hard for me to have all of this over shadowing his day. 30 is a big deal and Pat is such a treasure and I just wanted his birthday to be free of worry.

Before any of this started, I had considered having a party for him. I had planned on including all our friends, and then Pat's mom mentioned including some family as well and offered her home and backyard for the party. Once all of this started, Pat said he preferred to spend the day with just close family and friends, and no party. And so we spent some time with his parents and sister and some time with my parents over the weekend. On his actual birthday I decided to make some of his favorite foods and invited our bestfriends Abby and Brian over. I took the afternoon off to prepare. We had a wonderful dinner and I even made his very favorite chocolate cake with home made vanilla ice cream. So very Martha of me. When I look at the pictures from this night, all I can see is how pale and tired Pat looks. He doesn't look like his usual self to me.

The following weekend we went out with our whole group and celebrated Pat and Abby's birthday (they are 4 days apart). We had Abby and Brian fill everyone in before we arrived just so it wouldn't be weird if we had to leave early. Our friends were nervous but hopeful and provided a good distraction for us that night. Right during the middle of dinner but broke a fever and had to leave the table for a short bit, and I was happy everyone already knew and didn't have to ask a bunch of questions. A few days later, Abby posted her pictures and I was again focused on how Pat just didn't look like himself.

During this time Pat was taking naps everyday. He was going to bed early. He was still experiencing the night sweats and random fevers. I was preparing myself for the news that he was sick and trying to think of how we were going to handle the months of chemo that were coming. I was also trying to enjoy every single second with him that I could before we faced that. Being away from him was agony. It was all I could do to go to work every day. Other than work, I didn't want to spend one minute away from him. Not that I was convinced he was going to die, because honestly, I never considered that. I just knew that chemo was going to be incredibly difficult, and I wanted to have as much fun with him as I could before that started.

Pat's story-tests and appointments, and more tests

So the oncologist sends Pat for a CT scan and then we went back a week later for results. I was fairly irritated during the week as I'm not very good at waiting. Walking back into that waiting room was a little easier since it was a friday and most of the doctors weren't in the office so it was pretty quiet. We were seen pretty quickly, and the doctor came in and told us that the spleen was quite large on the CT scan. They were able to compare it to a CT that Pat had in 2008 and his spleen had grown 4 cm in 2 years, and was considered twice the size of normal. He again discussed what the possible causes of this could be and again mentioned lymphoma. Since this was the worst case scenario, he wanted to try to rule it out first. So he ordered a PET scan.

A PET scan involves injection a radioactive sugar solution into the patient and then doing a scan (similar to a CT scan). Apparently cancer metabolizes sugar very quickly and so it will grab up the solution and be "lit up" on the scan. So if you have a PET scan you don't want any lit up spots. Keep in mind it's friday. He tells his nurse to schedule Pat's scan for "next week." The nurse comes in and tells us the scan will be on wednesday, to which the doctor says, "no. I want it Monday, call them back." And so it is scheduled for monday, and then we were to return to his office on tuesday for results. The doctor could easily tell that I was alarmed at his urgency. He gave me a forced laugh, and said "I mean why wait if we don't have to, right?" Rrriiight. Sure. I am well aware how scheduling works. We don't jump unless we really need to.

The weekend passes and Pat goes to his scan on monday. Tuesday comes and I fully think we are going to get some answers at the follow-up appointment. The doctor comes in and opens the report and tells us that Pat's spleen and some nearby lymph nodes were "lit up" on the PET scan. This was not what we were hoping for. The doctor seemed to have a different demeanor at this visit. He said the next step was to get a biopsy of the spleen, which would provide a definitive diagnosis. He told us he needed to step out for a second and call a surgeon for his opinion. And so we were left alone. My tears started and Pat started laughing. The doctor returned and told us that we would be seeing the surgeon next to decide if he was going to biopsy the spleen or remove it. He then asked if we had any questions. I couldn't help myself. I asked him to please be honest with me and tell me if he thought it was lymphoma. He kinda danced right around my direct question and said something about being 30% convinced. I apologized for being pushy, and he said "well, at least your pleasantly pushy." I have to admit I kinda liked that.

Pat's Story, and it continues

The first appointment with the oncologist (I now refuse to refer to him as a hematologist because I just know we are dealing with cancer) is quite daunting. We walked into an extremely busy waiting room. Almost all the chairs were taken and there was a large TV on the wall that was entirely too loud. I glanced quickly around the room and noticed mostly middle-aged to elderly people. We most definitely were the youngest people in the room and it was apparent that I wasn't the only one who noticed. It felt like people were staring at us waiting to see which of us was the patient. Pat checked in and I grabbed a seat. They immediately took Pat back to a little lab and drew some blood. The TV was still blaring away and people were chatting. Different medical assistants and lab techs kept coming in and out calling out names. It seemed ridiculously loud and I could feel the panic rising up from my gut. I looked around at all the bald heads, pale skin, thin bodies, and couldn't believe we were sitting there. I told Pat that everyone needed to be quiet and I thought the TV should get turned off. He knew that I wasn't really freaking out about the noise level, and for the hundredth time in this process, took my hand and assured me that everything was fine.

I started praying. I've recently discovered that praying truly helps you escape. I asked God to touch my amazing husband's body, I prayed for all the people who were sitting there and for their significant others and I prayed that God would ease my anxious heart. I begged that He would be patient with me as I am learning to trust him fully. At some point my prayers were interrupted when a medical assistant came out for us. She took us back to the oncologists actual office. He sat there behind a huge desk cluttered with charts. He asked Pat to tell him the whole story. Pat stuttered and stammered, searching for the words to start. I interjected and explained how it started and how we were referred, not once looking at Pat to make sure he was okay with my taking over. Poor Pat. The doctor looks over all the labs and tells us that Pat is young and healthy and he really thinks all is well and we don't even need to be there. But, since we are there he sends us down to an exam room so he can do a quick physical exam.

In my mind, I knew we weren't done yet. I knew we weren't getting out of this that easy. He came down and did all his doctor-y things with his stethoscope and little flashlight. All was well until he touched Pat's abdomen. He told us he could feel his spleen. In a normal adult, the spleen is not palpable. He told us he would order a CT scan to check out the actual size of the spleen. He then told us the possible causes of an enlarged spleen: a virus or infection, maybe he was just born with a big spleen, and possibly lymphoma. There it was. I knew it. Cancer. It was like a sharp slap across the face. I knew it was a really long walk back out through the office and the waiting room and I really wanted to start the walk so I could hurry up and lose it. As we walked out we passed many doorways, and without thinking I glanced quickly into each one as we passed, until one particular doorway stopped me dead in my tracks. It was a big room filled with recliners and IV poles, each set occupied by a person. Some were watching TV, reading books, working on laptops, while others were wrapped in blankets. This was the chemo room and in a moment, everything became a little too real.

Pat's Story-From the start

Sometime during the week after Father's Day, Pat came down with a sinus infection. He took a week-long round of fairly strong antibiotics, and after a couple days was still having sinus symptoms. His allergist said it was quite common for sinus infections to be tough to treat so she prescribed him an even stronger antibiotic that he took for 10 days. Finally his sinus symptoms seemed better.

Fast forward to the weekend of the 4th of July. I notice that Pat is having night sweats, but hello it is July so who isn't right? However, over the course of the next few weeks, Pat begins to have fevers randomly throughout the day and continues with pretty intense night sweats every few nights. He then started complaining about feeling tired and weak all the time and began taking naps a lot and still sleeping all night. I began noticing he was looking a little pale as well. Finally one evening he came to kiss me goodnight and I could tell he was hot. He took his temperature and it was over 102. He said he didn't feel sick but just tired. Enough was enough. He called his family doctor the next day and was seen late that afternoon. They ordered some blood work which he did that same evening. Early the next morning the doctor called Pat to tell him that his blood counts were all out of whack and he was being sent to a hematologist. Pat called me to fill me in just as I was walking into work. I tried to sound normal and play it off as no big deal while on the phone with him, but as soon as we hung up, the tears started flowing and the panic was overwhelming. Hematologist means oncologist which means cancer. My initial thoughts were of leukemia, and I had 8 more days before we met with the oncologist to wrestle with that.

I couldn't decide how to handle talking with Pat about it. He seemed so calm and nonchalant on the phone so I was almost convinced that he had no idea we were being seen by a cancer doctor. I decided to leave it as such until I could feel him out a little more. No sense in both of us being nervous basket-cases. Someone had to stay normal for Jenna's sake. I spent the next few days on PubMed and with my nose buried in every single text book I could find, which is truly a horrible idea. I would occasionally ask him questions but was pretty much dancing around the subject.

Finally, it had eaten away at me enough that I asked him if he knew what a hematologist dealt with. He causally responded "yeah, cancer," and then went about his business. Ummm...hello?? Where is your freak-out then?? It was the first of many times throughout this process that I was left speechless by my husband's complete and total faith. He told me God was in control and he wasn't worried a bit. God already knew the outcome and it would be according to His will and in Pat's mind that's all that mattered. It was then that I decided I better start spending a lot more time with the Lord so that he might hear my prayers. My husband was leading me spiritually and I had never been so grateful.

Pat's Update

Since it's been awhile I thought I better spend a little time updating everyone. Pat's had the most going on lately so I figured I would start with him. As I started writing this, I realized it was going to be a very, very long post so I've decided to break it up into a few so no one has to read the whole story all at once. Consequently, I'm going to tell you how it ends first.

Pat has a metabolic condition in which he is unable to metabolize cholesterol properly. Most specifically he has a very low HDL level (the good cholesterol), and an insanely high triglyceride level. The goal for all of us is to have an HDL close to 50 or above. Pat's is around 20. And we all want a triglyceride level under 150. Pat's fluctuates between 600-800. This is a recipe for disaster, and leaves him at a very high risk of heart disease and stroke. What it has done to him so far is caused moderate to severe fatty deposits in his liver, which lead to his spleen enlarging to twice it's normal size. This condition is very treatable and we are extremely relieved and hopeful about the future. This picture was taken July 28, Pat's 30th birthday, when to be honest, I was feeling anything but hopeful.

The Escape Artist

Take a look at Jenna's new bed....



I was SO not ready for this. Bedtime has always been a bit stressful at our house. We used to rock her to sleep with a bottle of formula/milk, wait til she was good and passed out and then gingerly lay her down, all the while praying she stayed asleep. More recently we have read 3 books in the rocking chair, turned on some soft music, and turned off the lights. She generally points to her crib so we put her in and then leave the room. most of the time she cries for a 1-2 minutes and then is out. So last night I did just that, she stopped crying, so I assumed she was asleep. About 10 minutes later I hear her bedroom door open and she comes running down the hall with a completely smug look on her little face. I put her back in and she climbs right back out, this time nearly dislocating her arms. So out comes the screwdriver, and off comes the front rail. For the next hour, we walk her in put her in bed and leave the room only to have her follow us crying. I tried laying on the floor next to her crib (which I have NO intention of doing on a nightly basis), and she kept jumping out to check on me. She finally petered out around 1015. She slept until 230 at which time she rolled out of bed 3 times. Add to it a rough night with her allergies/asthma, and an incredible thunderstorm and we had a fairly sleepless night. We brought her in our bed (again something I have NO intention of doing again) and we all slept again.

These were taken this morning. She looks pretty happy considering her horrible night of sleep. I mostly took them because she looked so cute in her little outfit, and because when I see this little happy face it makes up for the irritation of last night and the tiredness I feel today.

So looks like I'll be headed to Babies R' Us at lunch for some doorknob cover things. Any other advice is super appreciated. Or at least prayers for a better night tonight.

I'm Back- Take 2

Ok so I had really good intentions of sticking with this blogging thing. But then I got discouraged because really, who reads this anyway? And I became a facebook addict so I figured why do both. I realize now that facebook is perfect for commitment-phobe/ voyeuristic folks like myself. I can update as little as I want while still reading what everyone else has going on. However, just like casual dating can be fun, in the end, it is not very satisfying. So I turn once again to this blog. My new attitude on this blogging thing is that it's not really about who is reading it but rather what writing it can do for me. I used to love to journal but never make time for it anymore. I think it will be a healthy outlet for me. I also refuse to pressure myself to blog daily or post tons of pics each day, or write long stories when all I have is pics. It will be whatever it is and that's that.

I just spent nearly an hour trying to put a fall face to my blog and now that I'm ready to throw my laptop out the window, I think I will just post a couple pictures for tonight.