A new home

Hello, everybody. Frank here again. Tina has enjoyed blogging so much these past few weeks that she’s decided to move up a bit in the blogging world. Time to update your bookmarks.

www.larrythelymphoma.com

It’s the same old blog you’ve grown to love, just with an easier address to type. Sort of.

Also, for those that are looking for a “sign up” button in order to get email reminders of new posts, it’s not there. I know. It’s been up for about twenty minutes and I already broke it. I’m working on it. Be the world’s best web designer is the highest item on my priority list. Right up there with be less sarcastic.

Table talk

Today was a go go go kind of day. Mom told me last night that I had to get up at 8:30am because I would be having special visitors (she even made me tidy the house). So at 8:30 this morning I reluctantly pulled the covers off, and pulled my pajama pants on (I just can’t sleep with pants on… I’m an “active sleeper” and my pants end up getting all twisted around). I made my way downstairs, where Melodie and my mom were already up, and I plopped myself down on the couch, bleary eyed. 9am came and went. Finally 10am came around, and just as I was beginning to wonder where these special visitors were at, the doorbell rang. Maids! Somebody had sent maids to my house! To clean! Anonymously! So thank you, anonymous provider of maids…. I appreciate your very thoughtful gesture.

While the maids were hard at work, and my husband was in bed sleeping off a night shift, mom, Christine, the kids and I headed off to my aunt’s (one of many) house for lunch. My family can sure cook… I wasn’t able to stay for very long because I had a massage scheduled for 2:30. That was a well deserved massage if I do say so myself! I had some concern over whether or not I would be able to lay on my stomach but I managed to do it without any pain so it was a very relaxing hour.

When I got home from my massage, mom was laying on the couch beside a very wide-awake looking Melodie. I told mom to go to bed and Melodie told me to sit beside her so I did. We watched a few cartoons together as I fought the urge to fall asleep. At 5pm I had to go upstairs to wake Stella up (or rather to tell Frank to wake Stella up since I can’t pick her up). I also asked frank if he wanted to go on a little dinner date. We haven’t been able to spend much time together lately between him working and me off adventuring with family.

We went to St-Hubert for supper, just the two of us. It was a really nice treat. The conversation kept flowing between work stuff to home stuff. At some point I asked him if he remembered what to do with my rings (engagement and wedding bands) in the event that something happens to me. I had given him specific instructions one night in bed shortly after my tumor was discovered. I told him that the rings are to be melted down and two identical bands are to be made with the same amount of diamonds (my rings are quite sparkly). One for each of my girls. Which leaves one diamond – the large center diamond on my engagement band. He has special instructions for that diamond but I’m keeping that between him and I. Hopefully nobody will ever have to find out what the instructions are. We also agreed that a living will would be a good idea. I don’t plan on going anywhere but sometimes life doesn’t go as planned. I certainly didn’t plan on cancer.

I have an appointment with my family doctor on Wednesday to extend my sick note for work and also to get a “prescription” for a wig. I have an appointment at the Moncton hospital in the morning for my MUGA scan and then I go upstairs to see my oncology nurse for new patient education. Then next Tuesday my portacath is inserted, and on Thursday it’s my first Chemo. So many appointments. It may not sound like it, but I am feeling optimistic for the most part. I have infrequent moments of doubt where I wonder if a cure is in my future but mostly I feel good about this. I have so many people in my corner. I feel like I can’t lose.

Mommy, I love you

Yesterday I was standing outside in my driveway I noticed the words “We love you, Mommy” scrawled unto my driveway with sidewalk chalk. My girls aren’t old enough to spell, and the writing was perfect, girly, loopy writing. I think the culprit might be Amy (or was it maybe Luc?). To the not-so-mysterious message giver, I thank you. It warmed my heart.

I received a call from the receptionist on the oncology floor. I have an “education day” scheduled with the nurse for April 27th. On this day I will sit with her and ask her any questions I have, and she will answer the questions I hadn’t even thought of. I have been trying to put together a little list of questions so I don’t forget to ask anything. I also have an appointment on May 1st to have a portacath inserted. The doctor had originally wanted me to get a PICC line, but when the nurse called yesterday, I explained that having a PICC line concerned me because Stella, my 19 month old, would likely pull on it. Just the thought of that makes my eyes roll into the back of my head slightly. I’ll be given a couple of days to heal from my portacath insertion, and on May 3rd I start an intensive 6 rounds of chemo (explained in my last post). I’m still waiting to hear from the receptionist for my MUGA scan (heart scan) appointment. It is exciting, in a strange way, to finally start chemo. I’m debating on whether or not I should shave my head now, or wait until after my first treatment.

Melodie has spontaneously been saying to me “mommy, I love you”. It is a strange thing to be a mother. I have never once craved the affection of someone so much before. Hearing her say it is like medicine for my soul. I hug her close to me and take in that sweet smell that only babies and small children have, and I know that I can fight. 

I’ve been periodically running my fingers through my mom’s hair – one of her most favourite things in the world. Mom likes to be pampered. It’s my little way of thanking her for working tirelessly to take care of the kids and maintain order in the house. Let me take my cue from Melodie and say, Mommy, I love you. 

It’s okay to cry

As you all know, yesterday was my surgery. Frank was kind enough to fill you all in because I could barely carry on a conversation with my visitors without falling asleep midway through a sentence. The sedatives also had the unpleasant effect of making me sick to my stomach. Throwing up after abdominal surgery is stupidly painful. Let’s never do that again.

Aside from that minor set back, the surgery itself went well. I was lucky enough to not require a laparotomy (where they open you up with one long incision instead of making a couple of small incisions for a laparascopy). So I have three small incisions of unknown dimensions on my abdomen because they are covered in gauze.

Yesterday on my way to the hospital for the surgery I received a phone call that I decided not to tell anyone about. The receptionist on the oncology floor told me that I had an appointment the next morning to go over my PET scan results and my bone marrow biopsy. I’m not sure why I didn’t tell anyone… I just has a feeling that I should keep it to myself. I’m glad I did because I have had a little time to digest the information and let it leek out to important loved ones before getting dozens of emails and text messages asking me what the results of the tests were. The results were not as good as I had hoped. My bone marrow tested positive for lymphoma which means that I am a stage IV. The long diagnosis is stage IV follicular non Hodgkin’s lymphoma. Fortunately, a stage IV lymphoma diagnosis doesn’t carry the same weight as, for example, a stage IV melanoma diagnosis. Melanoma at a stage IV is basically terminal. There isn’t much that can be done at that point. On the other hand, a stage 4 lymphoma usually still responds quite well to treatment. Remission is very likely. My doctor is optimistic that with 6 cycles of R-CHOP chemotherapy (each cycle has a duration of 21 days) I should go into remission. He also said that should a relapse occur, that a bone marrow transplant would be the best option for me. I know we aren’t at that point yet but you have ALL asked me at one point or another what you could do for me… So here it is: if you aren’t registered as a bone marrow donor, do it now. All it requires is a mouth swab. It’s that easy. If I do end up needing a transplant, it will be better if you all are already registered. And if I don’t need a bone marrow transplant, you may end up saving someone else’s life.

So what’s next? My nurse will see me as soon as I’m feeling better to “teach me”. I’m not sure what this entails but those are her words. She is a very kind and compassionate nurse. I will have an appointment for a MUGA scan which is a scan to check the function of my heart because one of the drugs they give is hard on the heart. I will also have either a PICC line or a portacath put in. Chemo will be starting as soon as possible. It’s a lot to take in.

When I got home from the hospital I was tired and in quite a bit of pain so I took two dilaudid and tried to go to bed. Finding a comfortable position was difficult. My back, shoulders, chest, and abdomen were all hurting so bad and moving around caused extremely painful spasms. Finally the pain and frustration caught up with me and I cried for the first time since they found the tumor. I did eventually manage to get comfortable (it required about 7 pillows) and I fell asleep for an hour or so. I am concerned about attempting to go back to bed tonight.

I told Frank today that I feel like I am living someone else’s life. How can this be happening? How could I be diagnosed with cancer 20 years after my sister was diagnosed with hers? It’s a strange feeling – I knew I had cancer but somehow having it confirmed just feels different.

Click here to learn more about registering.
And share this blog with everyone you know so they can register as a donor too.

Insert witty title here

Ladies and gentlemen, welcome. I’ll be your tour guide for today. My name is Frank. Your usual tour guide called in sick and took the day off. Show of hands: who thinks she’s faking? Anybody? Really? I’m the only one. Hmmm.

Tina was scheduled for a surgical biopsy today. The plan was to attempt to excise a little bit of Larry by way of laparoscopic biopsy. Tina tells me that’s a big word for a camera that goes through your bellybutton. Should the surgeon not be able to excise a big enough sample safely with a scope, he’d make a larger incision and have at it. With his bare hands. Massive hands. Hands that could choke a bear. I’ve never seen that happen but that’s what my sleep deprived brain is farting out right now. Sorry, Doc.

The good news is that the laparoscopy went smoothly. No need for larger incisions, incisions that would have added two to three days to Tina’s recovery. If everything goes according to plan, I’ll drop Stella off at the babysitter first thing in the morning and I’ll pick Tina up in time for an early appointment with the oncology specialist. Even though today’s biopsy results won’t be available for review for another week to ten days, we do have something to look forward to tomorrow morning: bone marrow biopsy and PET scan results. Speaking for myself, I’m pretty excited by this. It finally feels like we’re getting something back, something solid and concrete, from Tina’s health team. This is by no means a knock on their diligence and efforts. Far from it. It’s just that up until now, Tina’s had to go through multiple tests, each separated with seemingly monstrous periods of waiting around. Now it’s time for some results. We know what we’re dealing with. That’s been a known fact to us for quite a while. What’s unknown is the next step. With these results, we’ll finally be able to have a better idea of what treatment regimen Tina will have and that inches us closer to getting better.

This next paragraph is not for the faint of heart. It’s me. Being mushy. Everybody look away, there’s really nothing to read here:

Seeing my wife with oxygen tubing up her nostrils, an IV pole hanging multiple narcotics and a glazed look in her eyes as she continuously drifts between chemical sleep and hazy wakefulness really sucks. It really freaking sucks. Trading places with her simply isn’t possible but every time I see her in pain, a little bit of me dies inside.

Cough. Okay. We all good now? Yeah, we’re good.

Once Tina feels a little bit more up to the task, I’m certain she’ll be back to typing away on the blog, keeping you up to date on how things go. I know I’ve enjoyed reading her posts because she’s been taking the time to formulate her words carefully. She’s examining exactly how she feels about herself, her family, her condition. By helping herself this way, she’s helping me too. The blog also surprised me. Not in the sense that I didn’t think Tina had any talent for it. Far from it. I was simply surprised. After five years, I never knew Tina had any interest in writing anything down. No diaries or journals, fiction or poetry. All of a sudden, she’s blogging and most importantly, she’s enjoying it. And you know what? I love that.

Keep ‘em coming, babe.

Living it up, nerd style

Frank’s mom left earlier today. We dropped her off at the airport after a lunch and a walk at the mall. When I was ordering my food I saw two of my coworkers walking towards me. I stared at them coming towards me, longer than I should have, wondering if I should wave. I was glad to see them so that’s not why I was debating whether or not I should wave… I was debating because I wasn’t even sure if they would recognize me. I know that probably sounds so stupid. They have both seen me since I cut my hair. But I wasn’t wearing any makeup. I have never, not once, done a shift or gone to a work event without a liberal application of eyeshadow and mascara. Well there you go, you two! You’ve seen what lies under the mask! Haha!

The weather today has been beautiful, if you ignore the fact that the wind is enough to knock a small child off of her feet. I am actually planning on taking Stella outside to play on her swing set once I have finished writing this blog. I picked her up and bounced her around on my shoulders as much as possible today because I know it will be a while before I am able to do it again. I wish Mélodie was here so I could do the same with her. The upside to Melodie’s age is that she is pretty into snuggling on the couch to watch cartoons. Stella is too much of a busy body for snuggles – unless she has a booboo.

Tonight I’ll be packing myself a little bag for the hospital, since I don’t know how long I will be staying. I plan on packing a mirror and a little makeup (hey, it will give me something to do!) and the crocheted blanket I started making Stella eons ago. Once I’m finished with it I will finally be able to start on Mélodie’s.

I suggested to Frank that we try to pull an all-nighter tonight and watch some star trek (yes we are nerds). It’s not like we will be getting much sleep anyway. I get to have a medically induced sleep tomorrow anyway. So, tonight we have a date with captain Janeway.

Send me some positive vibes, people!

Panties and date nights

Weird title, right? I know what some of you might be thinking, and I say to you “you have a dirty dirty mind”. Let me address the first part of the title: panties. My youngest daughter, Stella, who just turned 19 months, is now using a potty rather well! After the nightmare that was potty training Melodie, this is a very welcome surprise. If stress causes cancer, potty training Melodie gave me lymphoma (this is a joke, by the way. I do not in any way think my kid caused my cancer). Anyway, I will soon have to invest in some pint size panties for my little monkey and I couldn’t be more excited to not change another smelly, soggy diaper.

Now onto the second part of the title! I bet that part is pretty self explanatory. Frank and I have a gift card to the movie theatre that we’ve had for quite some time so the mister and I are off to see a flick tonight. It’s been quite some time since we’ve gone to the movies so it will be a nice little change from the norm.

You will all be quite happy to know that I was PAIN FREE today! You can do a happy dance for me if you want. It’s okay, it’ll be our little secret. Now if only I could find a cure for the pesky fatigue I’m dealing with. I have all these big aspirations for my day when I wake up in the morning and by 2pm I have completely burnt myself out. I haven’t figured out if I’m in denial about my energy level or if I really don’t know my limitations. Honestly, I think it’s a combination of both. It is incredibly frustrating to not be able to keep up with a normal daily activity level. Not to mention that I have two kids to keep up with – and I desperately want to keep up with them. I want to chase them around the yard and bring them to the park. I know that chemo will only make the fatigue worse but I also know I’m not going to let it stop me from being the mom that my kids deserve. I might have to modify some of the activities that I do with them but, even if I have to prop my eyelids open with toothpicks, I am going to enjoy my summer with my kids.

So far my kids have gotten the really good end of the stick as far as my diagnosis is concerned. For the last 4 weeks it has been like a mix of christmas and Disneyland for them, what with being spoiled with toys and candy love from their grandparents. That is exactly how I want it to be. If my kids are going to notice that something has changed in the last 4 weeks, I want it to be for the better.

Surgery is the day after tomorrow!!! Eeeeeeeek! I will admit that I’m starting to get a little nervous!

Well that’s all for now; thanks for tuning in!