Excellent news! (And the emotional aftermath…)

For those of you who are friends with me on Facebook or in “real life”, you have already heard the great news that I am officially in remission from diffuse large B cell non-Hodgkin’s lymphoma!!

I got my most recent PET scan on July 15th, and all went well as it did the last time. It’s really not a difficult process, and it’s good that I don’t mind it because I’ll need one every 6 months for the next two years and once a year for the following three years.

The wait between the scan and my follow up appointment with my oncologist wasn’t too bad for the rest of the day on the 15th and 16th, because I know it usually takes the radiologist at least 24 hours to read the scan. My anxiety was rising by the morning of the 17th and I was at full tilt by the evening, although I tried not to show it. I was really hoping my hematology oncologist would give me a call with good news. Last time, he didn’t call because the results showed active areas and I needed radiation, so I couldn’t help but think this time around that he didn’t want to break bad news to me over the phone, hence no phone call. By the morning of the 18th, I could barely contain myself while I was waiting in the exam room for my doctor and I had actually resigned myself to the idea that the cancer might not be completely gone.

All of that washed away though when my doctor appeared in the door way of the room with a huge smile on his face and he said, “I have great news for you!” A wave of relief came over me and I was all smiles while he explained that my PET scan came back completely clean. In fact, he had received the confirmed results and films from the radiologist around 8:30pm the night before and he debated calling me but figured he should hold off until my appointment in the off chance that I didn’t answer the phone. He didn’t want to leave that information in a voicemail and thought it would be too scary if he just said, “Jocelyne, please call me back.”

Besides, he said, “I really wanted to tell you in person to see the look on your face!” I love that my oncologist and the nurses are just as excited about good news as I am. I would imagine that my oncologist doesn’t have many opportunities to deliver great news like this so he probably enjoys them just as much as his patients.

While I was basking in the glow of the good news, we talked about how extreme my case was and how lucky I was that I was in remission. To put things in perspective, my oncologist told me that he has another patient who is a few years younger than me and she had a smaller mass in a similar area. Same form of cancer, same course of treatment – R-CHOP and radiation. We were both healthy prior to diagnosis. I went into remission, but he had to tell her just the day before that the radiation did not eliminate the remaining cancer cells in her mass. I got to walk away from the cancer center on a cloud, barely believing that I was done with treatment. She walked away knowing that she’s probably not even half way through the process, now looking down the barrel of the gun at another set of treatments using a more experimental and harsher chemotherapy. My oncologist told me that he is so happy for me but can’t help but constantly think about why the treatment worked for me and didn’t work for her. I can’t help but think about it either. Occasionally, I get a pang of survivor’s guilt but I try to push it out of my head. I am so thankful that I’m in remission, I really am, but I can’t help but think about all the other cancer patients – some who I’ve met and many I have not – who aren’t so lucky.

More than a week has passed since I got the news that I’m in remission. Truthfully, I don’t physically feel that different. I’m still fatigued, and my fingers are still numb. I’ve been having more memory issues lately in terms of word recall and remembering where I put things. Acid reflux is still a pain in the neck (literally). However, the pain in my shoulders and rib cage from radiation inflammation is gone and I’m able to breathe a little bit more easily. I know that these symptoms will ease up over time but it could be a long while before I feel like myself again and I may not ever feel exactly the same.

The truth is, I’m not entirely sure that the fact that I’m in remission has completely sunk in yet or if I’ll ever feel this sense of extreme elation that I thought I would feel. Intellectually, I’m elated because I know the cancer is gone, but I don’t think I’ve caught up emotionally yet. I’m tremendously grateful to everyone who’s helped me through this process and that I am one of the lucky ones who has gone into remission. There are no words to describe that feeling. I’m proud of myself for getting through it as I have. I suppose, though, that I thought I was going to be singing from the rooftops, telling everyone I know that I’ve survived the experience and I really haven’t done that. Jeff and I obviously called family and emailed friends/posted on Facebook, but I just don’t feel giddy or elated about it all as I thought I would. I keep thinking that my bout with this isn’t nearly as difficult as that of so many others, although my oncologist keeps reminding me that I was actually in a dire situation when we first met, so this perhaps isn’t as momentous to me because I don’t feel like I went through as much as other cancer patients. Maybe I’m just not giving myself the permission to celebrate fully because of that? I don’t know.

I’ve also tried my best to compartmentalize and battle on through my experience with cancer, not allowing my emotions to get in the way or cloud my judgement regarding treatment or how I was feeling physically. It’s entirely possible that this will all hit me like a ton of bricks one day when I least expect it. I’m also still physically connected to this experience by my portacath, but I have the removal surgery scheduled for Monday. I think I’ll begin to feel like I’m actually not in active treatment anymore once I see that port outside of my body. I won’t be physically tethered to cancer once that’s done.

I also know that I will still see my oncologists for a long time and that the greatest likelihood of recurrence for my form is the next two years so perhaps I can’t completely allow myself to feel the release of relief yet because I know I’m not entirely out of the woods.

Mostly, I think I’m just beginning to feel out what life after cancer will entail for me. I will go back to work in less than a month and I’ll try to resume a normal life. I do feel like cancer has changed the way I prioritize things and I want to spend my time doing things that make me happy and fulfilled. I don’t want to spend my time on things that stress me out or make me unhappy anymore but I don’t know what that will mean in a tangible sense until I resume my life as it was before cancer. I’ll continue to write about my experiences with this in the meantime and hope everything sorts itself out.


Waiting for the next PET scan…yet, life goes on

I haven’t been too active on here lately, partially because there really hasn’t been any cancer related news to report and partially because life has been busy with non-cancer related events.

I have my next PET scan scheduled for Monday morning at 8:45am. This is the biggie…the one that will tell me whether the radiation treatments knocked cancer into remission. I won’t get the results until Thursday when I have an appointment with my hematology oncologist so that’s going to be a tough wait. He is very thorough when it comes to the radiology reports, so realistically, he won’t be ready to tell me the official news until Thursday anyway. Typically, the radiologist who reads my scan will call him with a verbal summary and then the radiologist will type up a report based on the films. This usually takes at least 24 hours. My oncologist looks at the films when he receives them and interprets them without looking at the report and then he will compare what he sees with the written report from the radiologist to make sure everything matches up and that there aren’t any discrepancies between what he sees and what the radiologist reports.

I must say that I’m cautiously optimistic about the results this time around. I no longer have persistent pain in my shoulders or trouble swallowing. I have occasional roving pains inside of my rib cage, acid reflux and, of course, fatigue but my symptoms following radiation seem to be reduced. Fingers crossed for good results!

I also know that I’m feeling better mentally and emotionally, because I’m not so focused on just getting through my treatment, but thinking about the future. To that end, Jeff and I have done some things in recent weeks that will impact us in the long term. Jeff would say that these were impulse purchases, but I’ve been thinking about them for awhile and now have the confidence to pull the trigger.

First up, we bought a new car!! I had a 2007 Hyundai Tucson with 160,000 miles on it that I absolutely loved. I just finished paying it off, but my 90 mile round trip commute is now looming. My gas mileage in it was good for a small SUV but not great budget wise for us, considering gas prices lately. It was also due for about $2000 of maintenance work and the car was only worth about $2700. It just didn’t make sense to put that money into an older car that probably wasn’t going to last me another winter. So, when the business manager from the dealer where I bought that car emailed with some good deals on pre-owned Sonatas, I jumped at the chance.

After hours and hours of negotiation by Jeff, I ended up buying a 2012 Hyundai Sonata in Indigo blue. It looks like this one:

ImageI absolutely love it! It has all of the bells and whistles that I wanted and it’s really fun to drive. When we were talking about monthly payments, I must admit that I hesitated and wondered if I should be really be buying a car right now without knowing whether I would be returning to work in the fall. However, I pushed that thought out of my mind, because I know I will be going back and the cancer will be gone eventually and just enjoyed the new purchase!

The other big addition to our lives is this little guy:

ImageMeet Sterling, our 13 week old kitten! Jeff and I adopted him last weekend from a great rescue called East Providence Volunteer Services for Animals. I’ve so badly wanted to have a pet again after many years of living in places that didn’t allow them and since we can’t have dogs here, we decided on a kitten. He is absolutely adorable – active, playful, and cuddly. He has brought me nothing but joy. We love him so much in fact that we’re adopting a little girl to be his playmate next weekend. Her name will be Bergie (after Patrice Bergeron). She definitely chose Jeff when we met them a few weeks ago.

So for the moment, life is proceeding on as normal. Keep your fingers crossed for me next week and I’ll be sure to post again as soon as I get some news!

Good news and okay news

It’s been quite a busy week since I’ve last posted. I’ve had a number of doctor’s appointments, and I had an opportunity to go visit my parents and sister in NJ for a couple of days. It was so nice to just be a part of their daily routine and spend some time with everyone.

Now, it’s back to cancer life and back to reality. I’ll probably write about what’s been happening over a few posts. I’m at the point now where I can’t type for long or my fingers fall asleep…stupid vincristine.

After I last posted, I had an appointment with my hematology oncologist. Since I was supposed to get the results of my latest scan, Jeff came with me, which was great. We first talked a bit about side effects that I’m still feeling – more persistent peripheral neuropathy (hands and feet numbness) and fatigue. My hair is growing back and I’ve now transitioned to wearing a baseball hat. I should feel comfortable going without a hat in a week or two, I think. My digestive tract is finally calming down, so long as I drink a ton of water every day.

Of course, I was chomping at the bit for my scan results. My hem/onc reminded me that the CT scan taken half way through my chemo treatments showed the mass shrunk from 13 to 5 cm. Since that type of scan doesn’t show whether cells are metabolizing, we didn’t know if this mass was scar tissue, active tissue, or a combination of the two. As it turns out, there is still some active tissue left within this reduced mass at this point. I asked if I could see the scan and how much active tissue is actually left.

He pulled the PET scan images up for me and they are absolutely amazing to see. It was so cool to see my own anatomy in sections like that. He showed me the remaining mass that’s about 5 cm across. Within that, there’s a horseshoe shaped section on the left side that I would estimate is about 25% of the total mass that was “hot”, hematology slang for active cancer cells. It’s really tough to tell because of the shape but that’s our rough estate.

He tends to think that the chemo did its thing in the first few rounds and the mass likely hasn’t changed as much in the last couple of rounds, although it has likely kept things manageable. Why doesn’t the chemo kill off all of the tumor? As the tumor dies off, so does the blood supply the cancerous cells generate to feed the tumor initially. Since chemo is distributed through the blood stream, some areas of the mass may not be subjected to the chemo medication after it is cut off from most of the circulatory system.

He then went over my options. He strongly recommended getting localized radiation that would focus specifically on the mass that is still active. He couldn’t elaborate on specifics of treatment but he would refer me to the radiation oncologist who he feels is the best in the clinic.

The alternative would be to wait three months, get another PET scan and see if the mass reduces further in size. This theoretically could happen as the chemo is still working its way out of my system. He has had patients who have opted for this as they’re just fed up with getting treatments after six rounds of chemo. The risk here, of course, is that the active area could grow again. Since I have an aggressive form that grew to 13cm in about six weeks or so, we can assume the same thing could easily happen again and I’d be back to square one or even worse.

The decision was easy for me. I know the chances of this mass shrinking any further without additional treatment are low and that it would likely grow if anything. I really would like, and need, to return to work in the fall, so I can’t afford to do nothing right now. Plus, if there’s an option to treat this further and hopefully get rid of everything now, why wouldn’t I take it when I’m on leave? Plus, I would be a basket case if I waited another three months without knowing it was shrinking.

My hem/onc said he figured I would opt for the radiation but felt he needed to present all options. He also said that if I were his family he would recommend radiation now under the guidance of the doctor to which he referred me.

Ultimately, he was really happy with the results we got from the chemo alone. To go from 13 cm to 1 cm was a great result. It’s tough to have to get radiation but I feel like knowing there was this huge reduction in active mass size allows me to see the light at the end of the tunnel.