The Original Blog....

As I mentioned in my "About Me" here I started this blog offsite, nonpublished this winter when I felt the need to write about Lymphoma and my health...um...adventures. It was to be a release for me and a means of communicating updates to family and friends. But as the months went on, I decided I didn't want a blog dedicated to just that. It seems negative and, well, a downer (and don't anyone dare ever call me that SNL character name!) and though I do need and will write about it, my health doesn't define me and I simply have other things to say. Maybe the things I do write about it will help others going through something similar and for that, I'm glad to share...

So for anyone who’s interested, here's what I began at the beginning of 2012 while still in chemo...

THE STORY

"Well, now we know what it is," my doctor's lilting voice relayed over the phone. "You have a blood clot on your jugular vein." "What?!" was my immediate, shock-filled response. I stood there in the darkened room where I just had an ultra sound that fortunately my doctor ordered to find out why a swollen, yet hardened mass on the left side of my neck hadn't gone down. I knew something wasn't right even when a CT scan the week before didn't show anything but I never would have thought it was a blood clot - never mind what it eventually meant: Lymphoma.

Of course that October afternoon I had no idea that that was just the beginning of a crazy, unexpected journey. My doctor told me she was going to contact a vascular surgeon that she knew and for me to go home and wait for a call back from her. I hung up the phone and sat there trying to process they fact that I had a blood clot. "I don't know what to do," I said aloud both to myself and the George Carlin lookalike tech who found the clot. He stood there solemnly, not really knowing what to say himself.

I drove home in a haze, found out I had to go back but this time to the emergency room, and thus began my "adventure" in the medical world....

I was admitted to the hospital that night. For two weeks I had doctors and various specialists there try to figure out how or why I got a blood clo in the jugular vein as I kept hearing how unusual it was to get one in that location. They suspected I had an infection, possibly caused by getting a broken tooth repaired in September but no one could really confirm if that was the cause. There were other possible factors, but again, it was just speculation. But the real problem was this swollen, painful left side of my neck and the large, hardened mass beneath it that just wasn't going away.

I was on antibiotics the entire time and blood thinners and after a week was sent home with what is called a PICC line in my arm so I could administer antibiotics to myself intravenously and I also had to give myself injections of a blood thinner for a few days. But I actually got worse when I got home. A couple days later the right side of my neck starting presenting with the same problems as my left only in an accelerated manner. The left side pain and swelling had progressed very slowly over the course of a few weeks whereas the right side did exactly everything the left did but in the course of a couple days! It actually started while I was still in the hospital but they just attributed it to the infection.

Two weeks home: Drained and side-effect-ridden by the antibiotics....so weak I could barely walk.....no appetite....hearing affected....bad allergic reaction to the antibiotic....etc., etc.....Finally my infectious disease doctor realized that weeks of antibiotics with no progress wasn't right and had me readmitted to the hospital.

At this point it is November. To make an already long story short, the doctors there began running various tests to see what was going on (Lyme? Cat Scratch Fever? Mono? TB?) but I think they suspected Lymphoma.

It took a while to get an official diagnosis. First step was a biopsy. I was told that even then, the lymph node pathology would have to be analyzed and that ended up taking over a week. However, there was enough evidence after the biopsy that the surgeon could tell me immediately after that it was in fact lymphoma - exactly what kind is what the pathology was about. I'll tell you one thing I learned at that moment, if you're going to get news like that, it is far better to get it gently expressed to you while lying in recovery after surgery in a drugged-up haze. Somehow my surgeon breaking the news to me that way softened the blow. I wonder if they do that on purpose!

A week or so later I was told I had High Grade, B Cell Lymphoma and that, thankfully, it was treatable and curable. However, as an addendum to that, about a month later in December, it was discovered that there was a T cell, too, which I guess a B and T together aren't as common. Still treatable and curable but it requires more work, so I was told I had to have a stem cell transplant at Mass General Hospital to hopefully get beneath the surface and take care of that. More updates on that later.....

ADJUSTING....ACCEPTING....
How do you? Honestly, since November I still feel like this is surreal and that I am in a fog. I decided the best way to deal with it is truly taking one step, one day, one moment at a time. I have a strong faith in God and know He has a purpose and know He is seeing me through - even though I daily ask for the strength. I have already experienced more incredible blessings through this than I could imagine. My family has been amazing - my parents, sister, and brother have stood strongly by my side from day one - and I know this is not easy for them but they have been so positive and supportive and their powerful love is beyond description. I KNOW I could not get through this without them. My young nephew and two nieces were amazing through this – they visited me in the hospital and never blinked an eye at all the scary medical equipment and such hooked up to their Auntie – nor reacted to seeing me this way – and they’ve stayed that way throughout. Their presence and love and acceptance still get me through. My aunts, uncles, and cousins - the love and support they give me help tremendously. And my friends - again, they help sustain me. They all encourage me, love me, are there for me and I keep saying they don't realize how much they help me get through these days but they all do! I am indebted to them all. All the prayers DO make a difference. Complete strangers who tell me they're praying for me. New people I meet. The doctors, nurses, aids, hospital and medical staffs, volunteers, etc., etc. I have always been one who wanted to see the good in people and as I got older, I started to wonder if that was my downfall or why I got hurt....but I know through this it has restored in me how much true goodness is out there! More than bad....yup, I am still the annoying optimist even through all this! After all, who would have thought that in a weird way, a blood clot ended up helping me!

DECEMBER - JANUARY
Back to the timeline...After 26 days in the hospital, I was finally released in early December. It was a bit rough while there. I got a lot weaker and sicker; even borderline kidney failure. I fortunately had ongoing support - family, friends, clergy visiting (even a local Bishop!); cards, flowers, all of the above really does make a difference when you're stuck in a hospital room for that amount of time. I have to say I felt numb at times and wondered why other than the first mention of Lymphoma why I didn't have a complete breakdown.

I have always appreciated nurses and admired what they do but after going through two hospital stays, my admiration and respect for nurses and nurses' aids soared even higher. What they do is incredible. I was so fortunate to be in the care of all these nurses and aids. As I am writing this now I am choking up thinking about all they did for me. I have always been the type that has had a hard time asking for help but the condition I was in I needed the help and whether they realized it or not, I was in awe of these nurses on a daily basis. Plus when you're in the hospital for nearly a month, you feel like a resident there. I got to know the staff from the daytime to the overnight - they comforted me, laughed with me, talked with me, informed me, were firm with me when I needed it ("you HAVE to take these pills, Debbie," "You need to walk three times a day...try!"). They were my liaison to the doctors.

I was told that I would have six chemotherapy sessions, three weeks apart. I had my first one in the hospital and the second at my local Center for Cancer - they are wonderful there and I love my oncologist.

Despite somehow catching a bad cold and cough and a painful eye inflammation called Iritis, it was wonderful to be home for Christmas. Oh and I got a wig just in time for Christmas, too! So yes, I have lost most of my hair and at that point I really didn't wear my wig much as I didn't go anywhere but doctors' appointments or blood draws but I had knitted caps and pretty head scarves that I wore with just enough hair to have bangs peeking out!

January 2012 brought two more chemos. Chemotherapy, I have learned, has some strange side effects and for me, they can vary and change each time. I am not complaining as for all the rough parts of chemo, I know it is helping me - in fact in January I had my first PET Scan and was told by my oncologist that it showed no activity in the lymph nodes! Good news! I cried when she gave me that good news! I am realistic enough to know that didn't mean the cancer was gone but it did mean the chemo was doing its job and it made all the chemo side effects worth it. As my dad said, I was beating it down. Yes!

So, the aforementioned stem cell transplant... Along with my local oncologist, I was seeing an oncologist at Mass General Hospital. He works with my doctor here and he even saw me a couple times while I was in the hospital. He very clearly explained to my parents and me why it was that I needed a stem cell transplant. It scared me at first - I had been living each day at a time and now I had to think ahead and it took me a bit to wrap my head around that. There is a lot to learn, do, and prepare when getting a stem cell transplant - they provided me with books, etc., and told me first I had to have my own stem cells collected - it's always best to use your own if possible so that was the plan but you also need to have a match in case yours don't work or if by chance you need another transplant, as you can't use your own more than once. My sister and brother were my two best possibilities so they said they would get tested. As it turns out, my brother was a match! I had cousins and friends who also volunteered in case my siblings weren't a match, which I still appreciate because it's not a fun thing to do. First step - have a port placed in my chest that was to be used for collecting and implanting the stem cells. Next step - get the cells collected. That's a good five- to six-hour procedure of laying in a bed and being hooked up to these machines that are highly sophisticated yet look like they're computers from the early '70s! It's tiring but painless....
Next step - finish chemos and then plan for at least a three-week stay at the hospital where the transplant is to take place. It's pretty intense - they give you an extremely high dose of chemo to bring your immune system to the very lowest it can go and then slooooowly give you your stem cells back and as that's supposed to eventually elevate you back. It's the best chance, my doctor said, of getting beneath all the layers and nabbing that nasty cancer. I had reached the point of accepting this and actually wanted to get it done so I could start my life over but then right around the fifth chemo my oncologist informed me and my parents that things had changed...
Apparently my original pathology from November had always presented in an unusual, abnormal manner but because I had all the symptoms of Lymphoma and all the tests they run to see if it's cancer confirmed that I did, they went ahead as planned. But at Mass General they have a conference before every SCT and a pathologist there questioned my pathology and thought it best to get a third opinion before proceeding with such an intensive procedure. They all decided to send it off to the NIH - National Institutes of Health, which according to my oncologist, it is the highest you can go in the United States. They came back questioning it as well so the SCT has been put on hold, sixth chemo cancelled, and due to the complicated and confusing nature of my case, all my care has been transferred to Mass General. My local hospital was truly wonderful but they went as far as they could and I was already working with both places. It seems the doctors are “confused” - not exactly what you want to hear. :-/ But my doctor was determined to stay on top of it and keep an eye on me. It is too risky of a procedure to do the transplant when there are inconclusive results but I admit at first I had a range of mixed emotions - my own confusion, fear, anger, relief - the most difficult part for me was there was a plan in place and now my place is Limbo Land - not a fun place! :-( So far my doctor set me up with specialists there, and I've seen him a couple times, last time was May but naturally, though they said they'd watch me closely, I was hoping for MORE closely! I have my first post-treatment PET scan and CT scan in early August and in the meantime have been going to physical therapy regularly to try to build all the strength back that I lost through the hospital stay, malnourishment, and chemotherapy. It whacked a lot out of me, which is fine because it helped me, so no complaints here, however, I never realized how challenging it is to recover from it. The battle is not over post-chemo - it rages on! I'm still a question mark - in fact, I've been told this could very well be published - when I dreamed of being published, this was NOT what I had in mind! LOL But if it helps others, then great! It's a watch-and-wait thing, which is normal after cancer. I may never need the transplant but my doctor said the minute there's any swollen nodes again or anything, he'll put me back on chemo and do the transplant. I hope and pray the scans in August will be clear but as always I’ll remain the upbeat, smiling, silly Debbie – who does worry but that’s understandable, right?! My fighting spirit is in place and I can only say this continuously life-changing experience has truly made me a stronger person. :-)

P.S. As an addendum to all this, I have to add there are SO many things between these lines that I didn’t write about….I realized in going through my texts to friends from the past nine months all the other things that went on that I would share with them but since I wasn’t writing during it all, I just didn’t “log” it let’s say. Some may come out in other blog entries but basically all the blood transfusions I’d like to mention – I had so many I lost count and it reminded me of how grateful I am for all those who donate blood. To this day, I wish I knew who all my donors were so I could thank them personally. And there’s so much more to all of this story and journey but hey, this entry is long enough, right? Thank you if you read this far!