Restore Life - The Way It Should Be.

So, it’s been a while.  I am happy that I haven’t felt the need to talk about “It”.  I’ve been very busy in my pursuit of being a card-carrying member of society again.  Busy working and playing.  Busy trying to forget about the days in which I was a girl interrupted.  And I go for long periods of time without giving cancer a thought!  I knew these glory days would come and they were well worth the wait.

Over the last month though, cancer has crept into my head.  I can name a half-a-dozen people that have passed away from cancer.  No one I know directly, but relatives of friends and co-workers.  Some of these losses are as young as I am.  And although I offer appropriate condolence, in my head I grieve greatly for each of them and their families.  I grieve because cancer sucks and it can hit anyone at anytime.  And we don’t understand who will get it or why.  And I hear about these people who leave children and loved ones behind and the question of “Why me?” rattles around in my head.  Not why did I get cancer, but why did I get to survive when someone else who had a bigger role in humanity was not so fortunate.  I am so grateful that I am alive, but disturbed by the lack of rhyme or reason to the world.

Yesterday I received my appointment for my annual PET scan.  It’s been a year since my last PET scan and about 16 months since I had my first clean scan.  I feel great and I am hopeful for an all-clear, but I would be lying if I said I am not feeling a little bit of “scanxiety”.   Nothing like I felt a year ago, but definitely a little tension in my neck that I can attribute to the anticipation of it.

Enough talk about the thoughts that exist in the shadows of my mind.  Let’s do a dramatic change of topic and talk about my 40^th Birthday.  I am THRILLED to be turning 40 in less than two weeks.  After thinking I might be robbed of another decade of life, I welcome it with open arms.  I am looking forward to celebrating it with my family and friends.  This Leo wants to be the center of attention!  Now if I can just find an appropriate tiara for the occasion…

Don't Come Around Now, You're Not Welcome Anymore

This week brings my 39th Birthday. There was a time that I was feeling depressed about this Birthday. After all, once you hit 39 it’s all downhill. It’s all wrinkles and senility and gray hair. But that line of thinking was pre-cancer. Another Birthday means I’m still alive and kicking. My 38th year will hopefully be known as the year I kicked cancer’s ass. And each future Birthday means I’ve managed to fend off the reaper another year.

I had my PET Scan today. It was my fourth one. My last one was in March. I had forgotten it was so long ago. The previous Scan was just after my last chemotherapy treatment, but just before radiation. My radiation ended in late May, so cancer has had two months post any type of treatment to re-invade. As I sat there before my scan, I couldn’t help but to think back to my previous scans. The first two were gray wintery days. I remember looking out the window and thinking that the weather certainly matched my mood. Those were the worst of days. The first scan was just after I had been diagnosed, and I was finding out the extent of the cancer. The second scan was after three chemo treatments. The brutality of chemo had started to take a toll on my mental state. I kept a brave face, but I was tired and scared.

Today was a beautiful sunny day. I chatted with Joe and Cheryl and met the new nuclear technician in training. The staff at the PET center have become familiar faces that bring a bit of comfort. The mood was light and cheerful. It was as if we were old friends getting together for lunch and catching up. The Scan went fine and I’ll get the results from my oncologist on Thursday afternoon. I am hoping for an all clear – it would be the ultimate birthday present.

And although I can’t help but to feel a little fear about the results, I am facing the future with the knowledge that I can handle whatever comes my way. If it comes back, I will fight it with everything I have. I want to see my 40th Birthday. I am counting the days until I turn 50. I want to get old. I want to forget where I put my teeth.

Thank you to the American Cancer Society for more Birthdays. It is organizations like you that provide the funding and awareness that makes it possible for more treatments and cures.

Keep your fingers crossed for me on Thursday! I'm hoping to be celebrating on Friday!

Talking to Myself and Getting Old

I am making my usual arrangements to prepare for my upcoming oncology related appointments.

First, I called to change the appointment time. I always change the appointment time. I am not trying to be difficult, though I am sure that my file says “patient is difficult about scheduling.” They scheduled my lab work for 11:00 AM. I ALWAYS ask for early or late appointments. I know that some cancer patients are retired and are able to come by anytime, but that isn’t me. I am a busy girl, and I have things to do! Cancer appointments are never a single appointment, and I can’t devote three days to middle-of-the-day appointments. Luckily, they were able to bump my lab work to 8:45 AM.

Secondly, I think I need a new PET Scan outfit. I have to wear clothes without clasps or zippers – so basically gym clothes. I had my winter “PET Scan” outfit, but I think I need a warmer weather outfit. The room is always cold though, so no shorts. And crazy socks are a must. Also, I can’t wear a bra during my PET, so I don’t want a top that is too revealing. No amount of revealing clothing will improve the results. I must shop this weekend.

My last appointment is the meeting with the Doctor to discuss results. I think I have mentioned before that he is not chatty. So if I don’t specifically ask questions, he might say something vague like “Nothing too concerning.” With him, it’s critically important to make a list of questions. Important things such as “Can I get some more of that Ativan?” “Why did my hair not turn red? I wanted it to grow back red!” “Can you write me a note to give me a few months off for medical reasons?” Ok, so those aren’t my real questions. But I do need to get my thoughts together concerning maintenance therapy, primary care vs. oncologist, etc.

The good news is, all of these appointments will be finished on August 4th, just in time for my Birthday on the 5th! I’m a little excited about my Birthday this year – there was a moment or two this year when I wondered if I would make it to celebrate the big 29th Birthday… ha ha ha …

This House is Clean

I don’t even know how to start this post. I have so much to say, yet when I try to find the words I want to say I am at a loss. Right now it’s less about words, and more about pure emotion.

I should start with the good news. My PET Scan showed no signs of cancer. The chemotherapy has done its job well. At the moment I heard the news I literally felt like a weight was lifted off of my shoulders. I’ve used that phrase for years, but this is the first time I physically felt it. At one point today I pictured the psychic from Poltergeist (Tangina) saying in her little pursed-mouth manner “This house is clean.” I felt like I’ve battled evil spirits to get Carol Anne back and my house is clean! And for now, I’m staying away from the damn light!

What’s next? For the next three weeks I still have to have my post-chemotherapy bloodwork. They still need to monitor to ensure I don’t get an infection after my last chemo. On April 11th I will meet with my oncologist to talk maintenance. They have great biological therapies now to help prevent recurrence. This will most likely require that I go into the oncology center for an occasionally infusion (IV) of Rituxan. This is not chemotherapy, and will not pack the side effects. It literally targets any lymphoma cells and beats them into submission. Getting through the first year is critical and my chances of long-term success increase with each passing year. I will also have regular PET scans. Robbie and I will also be making lifestyle changes to help ensure a long cancer free life. But I’m going to worry about the future tomorrow.

Tonight we are drinking champagne and celebrating my new lease on life. Thank you so much to all of you that have been so supportive. Every positive word was heard and appreciated more than you know even if I didn’t always respond – I will blame my chemo-induced fog.

Several people have asked if I will continue to blog. The answer is yes. I’m not done with “battle lymphoma” yet. I still need to get through this last chemotherapy, deal with the emotions of this experience, whine about my eyebrows, and figure out how this maintenance thing works. But right now, I’ve got to go. My champagne has sat for far too long.

Rachael Ray at 9 AM

This morning I had blood work scheduled at the oncology center followed by a PET Scan. Normally I do my blood work on Thursday, but the scheduling assistant thought she would be helpful and schedule my two appointments back-to-back. I have some sort of big note in my oncology file about my schedule and taking first/last appointments, combining, etc. in order to minimize my time away from work.

My first appointment was at 9 AM and I showed up about 10 minutes early to ensure that I could get to the PET Scan by 10 AM. I found a spot near the TV since I knew Rachael Ray was about to start. I am saddened by the fact that I’ve had so many appointments at the oncology center that I know the television schedule. I was also rocking a sweat suit and a winter hat since you are supposed to dress comfortably and without metal clasps/buttons for the PET Scan. Red chipmunk cheeks, sweat suit, hat, and almost no brows – I was looking mighty fine today.

Around 9:40 or so I still hadn’t been called to back and went up to the desk to let them know that I needed to go for my PET Scan and that if they didn’t get me back to the hematologist pronto I was going to need to reschedule. She said they were starting to call back the 9 o’clock appointments and to just wait and I should be called soon. In the meantime, some ridiculously cheerful woman in an apron starts walking around to give out free smoothies for colon-rectal cancer awareness month. Let me just say, and this could be the prednisone talking, that every person in that waiting room is acutely aware of cancer and we really don’t need a lesson in awareness. But that being said, a free smoothie is always nice. Except of course, if you’ve been fasting since the night before because you have a PET scan in 15 minutes and can’t partake in a smoothie. Then a free smoothie is not so nice.

I finally went back to the desk at a few minutes before 10 to let the receptionist know I’d just call and reschedule the blood work. And then she informs me to go down to the other desk because she’s in the middle of something and can’t reschedule me right now. I informed her that there was a line at the other desk and that I’M LEAVING. She desperately told me to come back at 4:30. I say fine and head down the street to the scan center.

I love the PET Scan center. It’s a small office with one PET/CT scanning machine. This is my third scan now, so I know all the people and the drill. After the drama at the oncology center, I enjoyed the hour of mandatory quiet time. I spent a good portion of it watching a very clever squirrel break into the feeder they have outside the window. I tried very hard not to think about the importance of this scan. After the scan, the technician gave me two thumbs up. I want to read so much into his “two thumbs up”. It was probably just a “you’re done, we got what we needed” signal. But that is the first time he’s done that, so I’m hopeful that he was foreshadowing good results.

I only sobbed once today, and I don’t really remember why. I think I was just happy that Robbie was home so I could share my drama filled day. He has become accustomed to my “prednisone Mondays” and comes home ready to empathize. I think he is hoping as much as I am that this is my last prednisone Monday.

Gratitude

Four months ago I was barely breathing.

The cancer had literally shoved my trachea out of the way. This picture shows my initial PET scan. Sorry for the clarity, this photo was taken of the Doctor’s computer screen with my cell phone. The picture is as if you are looking from the top of my head down into my body. Right in the center is my neck. The part glowing bright yellow in the middle is the cancer. The little black dot in the left of all the bright yellow is my trachea. It was supposed to be in the middle.

I am so lucky that I couldn’t breathe. So often, cancer quietly spreads with no symptoms – making it hard to discover. Way too often it’s too late. My cancer was sort of like me – it wanted to be the center of attention. It was shouting “Here I am! Here I am! I’m going to take your breathe away!” Thank you cancer, for being such a show off.

Today, I take deep breathes often. Some are sighs of relief that I am approaching my last chemotherapy session. Some of the deep breaths are just sighs of frustration that this takes so long. But mostly, I take deep breathes because I can and I’m grateful for it.

Today is a good day. Robbie and I have been married for 15 years today. Without chemotherapy, we may not have made it to this day. So thank you for this Anniversary, chemotherapy. Today I also meet with the oncologist. We will make plans for the future. Today we will talk post-chemo scans and tests. And then begins the waiting for results. Those results determine what my next few months will look like. And the waiting will suck. But as they say, good things come to those who wait.

For so long I was just trying to get through the day. Thinking too far ahead was terrifying. And I finally got to the point where I was trying to get through each chemo cycle. And after I reached about the halfway point I was focused on getting to the end of chemotherapy. Thank you, chemotherapy, for being a good distraction from the big picture. You really know how to be all-consuming. You can go now though, I’m ready to look up from the rabbit hole.

Irrational Much?

I didn’t realize how anxious I would be about the upcoming PET scan. The actual scan isn’t the issue. It’s an easy couple of hours filled with warm blankets and specific instructions to relax. It’s the results that are causing the angst.

This PET scan serves as a decision point. It will provide the information needed to determine the course of treatment, and therefore what my life is going to be like for the next few months. I’ll finally know if this last two months of having my life on “pause” will have been worth it. To some extent, we know it has been working because physically we can’t feel the tumor that led to the diagnosis. But we need to confirm that it’s happening in all the places it needs to happen. Even if the scan comes back clear, I will most likely have to finish three more chemotherapy cycles at a minimum to prevent recurrence. But I think if I knew that there was a definite end in sight it might make the experience a bit more tolerable.

We haven’t even talked about what the course of action will be if all is not well with the scan. I’ve started doing online research to prepare myself for that conclusion to make sure I ask the right questions. I know it’s unlikely, but I don’t want to be surprised. From my research, the options vary. For some, it’s additional cycles. For others, they change the type of chemotherapy used. The good news is, apparently we wouldn’t just give up. The bad news is that my pause button would be pressed for a bit longer.

Logically, I can tell myself that it’s going well, and that the PET scan will show good news. But emotionally I can’t stop playing the other scenarios in my head. I am not sure why it’s been particularly bad over the last week. The game plan has been in place since December and I’ve known that we’d be doing this scan about halfway through treatment. And for the first few days after it was scheduled, I was elated because that meant we had reached another milestone on the schedule. I think maybe the issue I’m having is that this is really the first hurdle that could change the game plan.

It is difficult to be diagnosed with something where you could actually…die. It’s hard to type. I hope you never have to experience something like this. It messes with your mind in such unexpected ways. The emotion is overwhelming and constant. Feelings of gratitude for the life you have. Unquantifiable hope for future days with those you love. Intolerance for those who are petty. Anger towards those that are wasting their days. Grief for the life that you might miss out on. Appreciation for the little things. And all of these feelings seem to come like a snowstorm – often one thought after another with no rhyme or reason until you feel so overwhelmed you just want to break down and cry. And that sometimes happens.

This angst is part of the reason I’ve tried to really focus on work this week. It keeps me mentally busy. But that is a double-edged sword. Working all day makes me fatigued at the end of the day. And mental fatigue makes me more likely to spiral into the negative thoughts that I am trying to avoid. I have a prescription from the oncologist for anxiety. He prescribed it when I started chemotherapy, and initially I thought I’d never use it. Now I find myself dutifully taking a pill nearly each evening to help me calm down and sleep. I do have to admit, it helps. It takes all those urgent and irrational thoughts, and quiets them a little. They still exist, but they are no longer desperately vying for attention.

I came home from work early today. I managed to work the full day Monday and Tuesday, but by early afternoon, I was feeling the fatigue coming on. I have a busy calendar tomorrow, so I took this afternoon to nap so that I can be effective and get through another full day tomorrow.

At least tonight is American Idol. Steven Tyler and his unpredictability will certainly distract me for a bit. And maybe after the nap I can make it through the whole episode!

Numb. Jab. Repeat.

I had a great showing at this afternoon’s tumor board. It was so fabulous that they want more.

My favorite surgeon called this afternoon to let me know that my case was presented, and that my oncologist was part of the review team. In an effort to have some sort of bedside manner, he said that the oncologist was looking forward to meeting me later this week. Then he broke the news that they need to perform another FNA biopsy. On the original pathology report, it was suggested that they may want to perform an additional test for more definitive information – not to the fact that I have cancer, but in classifying what kind. The FNA isn’t too big of deal. It’s a little painful and causes some serious neck bruising, but the good news is that it’s over in about a half an hour. I have it scheduled for Friday, since I already had to take time off for the oncology appointment.

Determining the type of cancer is critically important to determining my treatment. There are two categories of lymphoma, and tens of sub-types. It’s been difficult for me to research the disease just in the fact that I don’t know exactly what I have. The pathology said it was “large cell lymphoma”, but didn’t specify if it was T-Cell, B-Cell, Hodgkins, Non-Hodgkins, etc.

The oncologist also wants me scheduled for a PET scan. I completed expected this. This is a high-tech CT type scan that is performed with contrast. Some sort of contrast is ingested, and then I will have to sit or lie very still for a while. The contrast is attracted to highly active cells – i.e., cancer cells. We’re hoping the cancer is just camping out in my neck and hasn’t decided to go exploring. The PET scan will be Monday. Apparently, this can take a couple of hours so there goes another day wasted!

I need to get over the fact that I’ll be taking some serious time off. And luckily my workplace has been very gracious in trying to find ways to make the whole balancing work and cancer concept a bit easier. They’ve lined up someone to cover my work duties for whatever time I need to take off. The great news is they couldn’t have assigned a better person. She is someone I consider a mentor and a marketing guru, and if I was given a choice of any person within the company to take this on she would have been first on the list.

Each time I write this blog, I think to myself that maybe I don’t need to give the world a play-by-play. But it’s really more for me to work through my own feelings. I don’t know if it’s like this with everyone, but when you are diagnosed with cancer it becomes all you can think about. I don’t think I go five minutes without thinking about it. And part of it is that cancer creeps into every aspect of your life. At this time of year, I have a calendar full of holiday parties, the annual Hickory Wine Shoppe champagne tasting, cutting down a Christmas tree, house hunting with my Mom, etc. And every time I think of one of these things, I have to wonder “Will I be on chemotherapy by then? If so, will I be well enough to do it? Will I have lost my hair by then?” I even think further ahead to the vacation we have scheduled in May and wonder if we’ll even get to go.

I am anxious to talk with other cancer patients to find out if this type of thinking eventually wanes and if there is a new normal that develops to help one cope with the uncertainty.