Wednesday, March 30, 2011

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.

Monday, March 28, 2011

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.

Thursday, March 24, 2011

What's the Plan, Man?

On Tuesday, I met with my oncologist. He is not so chatty and it frustrates me at times. I am in no way commenting on his skill and/or intellect – I feel like my course of treatment has been very appropriate. I just wish he would lay out “the plan” more. The good news is, he did schedule the post-chemo PET scan and it’s on Monday! He will be on vacation, but I should be able to call around the middle of next week to find out the results. But I won’t have a follow-up appointment with him until April 11th.

I literally had to ask, “If the scan results are good/bad what happens next?!” He said that if it is clear, we celebrate and we start a maintenance plan of biological therapy. That would include infusions of Rituxan at regular intervals and bloodwork/PET scans over the course of the next year. Rituxan is NOT chemotherapy so even though I would occasionally go in for an infusion, I would not have the chemo side effects. The only goal of this therapy would be to prevent recurrence during the first year when it is most likely to happen.

He would not share with me the plan if the scan is not clear. He said he would need to see the scan and plan a course based on the results. I wanted more definitive answers, but I am learning that cancer is a lot of “wait and see”. Cancer has become a life lesson in patience.

Today was my last scheduled chemotherapy infusion. This morning before heading to the oncology center, we went to Panera and picked up bagels and cream cheese for the oncology center nursing staff. They have provided wonderful care, and I wanted to do something to show my appreciation. I had also picked up a card and wrote a personal note to April to thank her for making me comfortable, for answering my endless questions, and for making a difference.

It was an uneventful day – which I take less for granted after I had an unexpected reaction during Cycle Five that caused redness and welts near the IV site. I spoke to April, my nurse, about my conversation with the doctor and his unwillingness to discuss treatment options yet should my PET scan still show traces. She said that sometimes they just extend the chemotherapy to eight cycles. That brought me down a little – I REALLY don’t want to go through chemo anymore. I’ve kept my chin up, but I am really over it. But hopefully this line of discussion will be irrelevant because the scan is going to be clear.

Robbie won two of three during our scrabble tournament. I love that he doesn't let me win just because I have (had) cancer. And bizarrely, I won the game we played after I got the “good drugs” that make me sleepy and happy. Today went quickly and we were done in about five hours. I came home and had a nice long nap. We are currently relaxing and catching up on Tivo. I feel fine. Not “not-on-chemo” fine (I’m not sure what that feels like anymore – but I picture a lot of dancing around because you have the energy to do so!), but as fine as I’ve felt during all this whole thing. They give you good drugs on chemo day so this is generally one of the better days.

The prednisone gives me no energy boost anymore – just agitation. It’s only kicked in a little – I won’t be full-on evil until Saturday or Sunday. But I’m ready. We’re stocked with Captain Crunch and Grey’s Anatomy. But where did all sharp objects in the house go? That’s strange…

Tuesday, March 22, 2011


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.

Tuesday, March 15, 2011

Seeking Fuzzy Pink Bathrobe

I tried to take it easy and rest this past weekend. Saturday I relaxed quite a bit and even took a nap. But I’m not so good at the whole “rest” thing and by Sunday was tired of feeling helpless. So I made myself useful and did dishes and vacuumed up dog hair. I also helped Robbie move a bed to my Mom’s house. I know that isn’t a very long list of things I accomplished, but when you’re being poisoned you are grateful for the little victories.

Anyways, on Sunday night I noticed my chemo arm was red, tender, and a bit swollen along the main vein on the interior of my arm. It’s been bruised since December, but it was definitely more inflamed than usual. Because I am an expert on my side effects due to one too many nights of insomnia and way too much Internet reading, I know that blood clots are something that chemotherapy patients often experience. And I immediately jumped to the conclusion that I had a blood clot lodged in my arm.

I shared my self-diagnosis with Robbie and we both agreed that I should call the oncology center first thing on Monday morning. Sunday night I could hardly sleep. I was sure that they would check it out, and send me right to hospital. And then I began to worry. I was worried about missing work and leaving the new girl with no training. I was also worried that my current bathrobe looks about 100 years old and that there was no way I could wear it in the hospital. This led me to wonder if Robbie would be able to pick out a new bathrobe for me to wear, and some slippers as well. I know. Crazy.

Needless to say, I am not in the hospital. The oncology nurse did have me come by so they could take a look. But it was just bruising and damage from the chemotherapy. The reaction on Sunday was most likely from using my arm more than usual.

While I was at the Doctor’s office, I did mention that my mouth was more irritated than usual, and that it had been several days and hadn’t really diminished. I was diagnosed with thrush and was prescribed an antibiotic. Chemotherapy suppresses the immune system and it is very common to develop infections. I’m just lucky that all of mine have been pretty minor.

In other news, another wig encounter today. The concierge at the building where I work asked if I had gotten a haircut. Not to be cranky, but she must really not remember what my hair looked like because it’s currently several inches LONGER than my real hair. I was in a mood, because I responded by saying “I am on chemotherapy. It’s a wig.” I should be nicer, but the whole thing is just getting old.

I am also tired of getting asked any questions regarding how much longer. I don’t have an answer. I wish I did. I hope with every hope of my being that my last treatment will be next week. But even with my last session being next week, I’ll still have at least three weeks of recovery. And it is still possible I will need radiation. I won’t know until after another scan.

Radiation would not be the end of the world. Here is the part that makes me hope I don’t have to go. It would be every single day for probably three weeks, maybe more. My side effects would be hoarseness, sore throat, and fatigue. That would so completely suck.

Whoa, this post is getting long. And frankly, I’m getting tired! Good night all.

Saturday, March 12, 2011

This Dance Sucks

Mambo No. 5 has not been fun. Every time I get complacent and begin to “plan for” the type of experience I’m going to have with a round of chemotherapy, I get a not-so-subtle reminder that it is an unpredictable beast.

It started right from the infusion. My hand is still a little red and sore from whatever reaction I had while receiving chemotherapy. I’m pretty glad that I only have one more to go. For a lot of patients they put in a Port or PICC line so that you don’t have to have a traditional IV every time. But getting those put in are actually outpatient procedures. Because I’m young and was only slated for 6-8 infusions they opted to just go directly into my veins. I can literally see the bruising of every vein they’ve used.

On Tuesday of this week I had the worst reflux I have ever had. It was a wake-me-up out of my sleep nearly vomiting experience. And this was after taking acid-reducing medication and chewing a couple tums at bedtime.

Thursday I had an all-day meeting at work. Something about sitting in a conference room chair all day made my bones literally ache. When I came home from work I was exhausted and in-pain all over.

Additionally, I think I’m developing thrush. This is not a big deal, and I experienced it quite a bit with Rounds 1 and 2. Basically, it’s a very minor infection in your mouth that leaves whatever area that is affected a bit sensitive. In my case, it feels like I really burnt my tongue.

Lastly, and I won’t go into details, my stomach has not been well. This happens nearly every cycle, but usually it is just a day, maybe two. This cycle has been the worst so far. Part of it has been that I have been eating things out of the norm due to lunches/meetings at work.

Oh! I almost forgot. I have again been plagued with a little insomnia. Last night I was looking forward to great sleep considering I was so tired. But there I lay, wide awake at midnight listening to the dog snore.

I do admit, I probably haven’t rested enough this round. I get tired of being on pause, and sometimes just try to ignore the fact that I am not completely well. So maybe I’ve brought some of this upon myself. Robbie said that maybe there isn’t any cancer left, so the chemo is mucking more with my good cells.

I’ve been under the influence of chemotherapy for nearly 100 days. This thing started as the weather was turning cold, and now there are daffodils and cherry trees beginning to bloom. It has been a long cold winter. I have never been so anxious for a new season.

Wednesday, March 9, 2011

Out of Control

This morning I had my weekly round of lab work. The trip to the lab has become a thorn in my side. I ask for their earliest appointment so that I can try to get in and out quickly. I have yet to get out of their office in less than an hour. My appointment is always for 8:15, and I never actually see anyone until after 8:30. And then I have to wait for the results. I have not once had a low white blood cell count, but they still make me wait every week. This is one topic in which Robbie turns a deaf ear to my complaining. He is of the opinion that any place that is working hard to cure my cancer deserves a little leeway.

It has been little things like this that eat away at my psyche day-after-day. It is the Doctor’s appointments that I have to keep. It is going to bed at 8 PM because I’m so exhausted I can’t stay awake another moment. It’s letting go of projects at work and giving myself permission to do so. It is being on a conference call and feeling ready to scream because I couldn’t think of the next word even though I knew exactly what I wanted to say. It is feeling guilty that not a single person in my life gets enough of my time. I do need to clarify that no one makes me feel guilty. I do it to myself. I am certain that I must have been Catholic in a past life.

When I am in the mood to wallow like this, I have to step back and look at the big picture. I am going to get through this, and I am going to be a cancer survivor. This will be the accomplishment of a lifetime. And I will be better for it. I will remember to laugh every day. I will do the things that bring me joy. I will smile more. I will show appreciation to those I love. As Steven Tyler would say, and I can’t believe I am quoting him, I will be a plethora of passion!

In the meantime, I will try to fill my afternoons with a little afternoon delight made of marshmallow, coconut, and pineapple.

Monday, March 7, 2011

No More Tears

Oh how I am happy when my prednisone days end. Today was the dreaded day five. And for once, and this is a first, I did not weep! I am not sure if it was something I did that kept it at bay, or if I was just lucky.

One approach I took today was to not be amazing. I was a chemotherapy patient today. I went to bed at 8 PM last night and didn’t rise until 8 AM. This morning when I did get up, I was very lazy about it. I did not get a shower and get into “work from home” mode. I stayed in my PJs, drank a cup of coffee, and ate some cereal. For those keeping track of my cereal obsession – this go-around it is whole grain cheerios.

I did have a few “must do” items on my calendar, and I did those. But that was it. I didn’t frustrate myself by trying to do a lot. Part of my issue with the prednisone is that I have no concentration whatsoever. And then I get frustrated at myself for feeling like an idiot, which brings on the weeping and starts the “crazy” cycle.

Because I wasn’t so “crazy” the dogs weren’t all amped up. They slept most of the day. Of course that could be of course because they spent lots of time with their “Grandma” this weekend and were just exhausted. Maybe my Mom being here was good for us all. Maybe I was just tired enough today to not get the prednisone lunacy.

Hopefully I can keep the good mojo going through the rest of the day.

Thursday, March 3, 2011

Mambo No. 5

Ladies and gentleman, this is chemotherapy No. 5.

All morning I just kept saying “five of six”. Saying that to my self makes it seem almost done. I can see the end just over the horizon. There is still a chance that I may have to do radiation, but the Doctor won’t give me a definite answer until I have another PET Scan after my treatment is done. Let’s hope not. Everyone please collectively hope that the chemotherapy will be the end of it.

My favorite nurse was back today so all seemed right with the world. We were moving along pretty quickly for most of the morning until I hit the Adriamycin also known as the Red Devil. It decided to earn its devilish name today. The IV was in my hand, and the area below it started to turn red, swell, and get welts. It was just some kind of bizarre allergic reaction. It seemed very strange considering I haven’t had a reaction the other four treatments. The nurse stopped my drip for a few minutes and then gave me an IV of Benadryl and it cleared up after about 10 or 15 minutes. It slowed down my treatment a bit though and it ended up taking over 6 hours today.

For those keeping track of the Scrabble tournament - I won two games, and Robbie won one. I'm still keeping a little of my brain power! I had a 66 point word today with tuxedo! The "x" was a double letter, and it was a triple word score. Good times.

The Benadryl and Ativan drips made me sleepy and I took a nap when we got home. I asked Robbie to wake me after an hour so that I’ll sleep well tonight. I had a fabulous nap that was so good my pillow was wet with drool. After my nap we ran to pick up Robbie’s NEW CAR at the shop. We recently got a Toyota Highlander (used, but very nice) and he had blue tooth installed so that he can use his Droid through the car stereo system. He has promised to post a photo on Facebook, but I have yet to see it! It has been a busy week.

My Mom is in town this week. She has been fabulous and spent the day cleaning our house while I was at work yesterday and at chemotherapy today. My laundry is done, my bed has clean sheets, and our floors our sparkly. It has been wonderful. With chemotherapy it is hard to find the time to do the things you need to do, so house cleaning is not always my top priority. I appreciate it so much!

For the most part, I feel good. I’m starting to pick at my food a bit, but that is normal. I’m drinking lots of fluids and hoping for a good round with minimal side effects. ONLY ONE MORE ROUND! WOOHOO! I’m a little excited…