The Plot Thickens

The other day I wrote about my new tumor. Only ONE new tumor that is 2 centimetres in size. Now I’m wondering if I’ve got another one. It’s nothing I can feel physically, but my body seems to be causing me more problems. Just like it did last year at this time. One year ago I was having my ovaries removed because of a tumor. Now here I am with a new tumor (see previous post) and possibly a second to keep it company. 

Another thing that was discovered over this past year of scans was something suspicious on the tube that goes from my right kidney to my bladder. It’s known as the ureter (there’s your anatomy lesson for the day), and the ureter on the right side of my body has a blockage. Whatever this thing is, it’s gotten larger and is stopping urine from draining properly from the right kidney to the bladder. The last test that discovered the new tumor on my liver also saw that this “thing” was larger. My bone scan also showed that the radioactive isotopes were still in my right kidney when I was scanned. They should have been in the bladder or already eliminated (peed out). The shape of the kidney has changed and it’s obviously not functioning as it should. I can NOT feel anything and don’t notice a difference in anything.

I saw a urological surgeon last week about the blockage in the ureter and he painted a few different scenarios of what could be going on. He also stressed that we needed to do something soon, and the first step was to put a stent into the ureter to help the kidney drain. An opening came up this week and I went in on Wednesday (Dec 16, 2009) to have the procedure done. Everyone else was going in and out of there fairly quickly. Until I came along. Why is it that nothing goes right with this body of mine?!  It can never be simple for me.

This was supposed to be a simple, quick procedure but it wasn’t. The surgeon first needs to put a wire up through the bladder, into the correct ureter opening (left or right) and then the stent can be guided in place into the kidney. As the patient you are awake, not even sedated because it’s not really necessary (at least not as a woman…might be different for men!). I’ve had procedures done in the past where I was awake and unsedated but I don’t recall anything like this. I wasn’t worried or tense beforehand, as I knew what to expect. Or so I thought.

It turned out it would NOT be a simple, quick procedure for me. I should have known I was in for another medical adventure when I started feeling burning pain. It’s not an understatement to say that I’ve been through a LOT in the last 9 years of my cancer battle. I can put up with a lot, but for some reason this really got to me.  In the beginning I was chatting and joking with the resident, 2 nurses and the x-ray tech while the Urologist did his thing. Then it got to the point where all I could do was groan or swear when I started to feel this burning sensation. I tried deep breathing to deal with the burning, pressure and overall discomfort. It didn’t help matters that I was tense and the room was cool, as operating rooms usually are. I realized I was very tense so I made a point of relaxing my body…hoping it would help. It didn’t. I don’t know how long I was in there but there was a point where I wanted to say “STOP! I’ve had enough!”. That was some time after I really wanted to ask “How much longer?!” but was scared to know. The swearing got a little bit worse at this time.  I wasn’t loud or screaming, just repeating the same word over and over again. I was feeling like I might faint, and was actually hoping I would so I wouldn’t have to feel anymore. The sensations became so bad that I went back to deep breathing but started breathing too fast and they asked me to slow down. I was likely close to hyperventilating, but I also needed to hold my breath or breathe slowly and deeply for the x-ray that was guiding the wire up the ureter.

And finally I did what I should have done all along. I reached out my hand, so someone would hold it. I wanted to ask someone to hold my hand but the words wouldn’t come. I couldn’t speak, so I just stretched out my hand and the staff knew what I needed. A very experienced and smart nurse gave me two fingers to squeeze. I know she’s smart and experienced because if she’d given me her entire hand I would have squeezed the bejesus out of it, rendering her hand useless and putting her on Workman’s Comp. I squeezed those two fingers with every ounce of strength I somehow miraculously had, was deep breathing and still swearing occasionally (when I could actually utter a word). It seemed like this was taking forever, but in reality it likely wasn’t that long. I have to say the doctor didn’t just ignore me through all of this….he kept asking if I was ok and I told him what I was feeling at the time.

I think what really sticks in my mind is doing deep breathing and staring into the chocolate brown eyes of the x-ray technician. I’d been visiting with him earlier and when I was in pain I was staring up at him with what must have been a look that begged “Please make it stop”. I swear I could see empathy in his eyes. He genuinely cared, but of course there was nothing he could do to make it better. Just thinking he cared made it better.

Then it was all over. And when I knew it was over, I needed to get rid of the tension and uttered a long string of profanities that made the x-ray tech (with the chocolate brown eyes) say “We don’t usually hear language like that in here!”. I thought he was joking, but he wasn’t I had been so tense that now I really started to feel cold, was shaking and feeling light headed. Out came the warm blankets and I slowly sat up on the table. Those two nurses were so patient with me and wouldn’t let me get off the table until they were sure I was ok. I definitely needed the wheelchair ride out of that room.

I was supposed to have a stent put in that would go from my kidney, down through the ureter and into the bladder so urine can drain from the kidney. Turns out that whatever is blocking the ureter is bigger than we first thought. It’s blocking a fairly large stretch of the ureter and there’s no way a stent would fit. I’m guessing that the burning I was feeling was from the wire trying to go up through this area of the ureter. I think maybe it was such a narrow opening, and that’s why it hurt and caused such discomfort because I didn’t feel a thing in the early stage of the wire going up the ureter.  I don’t want to even think about what it would have felt like to try and get a stent through! For some reason (I should have asked why), the urologist said he thinks it’s breast cancer that is causing the blockage. I guess it could be a tumor or lymph nodes that are near the ureter and putting  pressure on it. There’s no way to know right now. I don’t know where we’re going from here, but the urologist was able to get the wire into my kidney and get a sample of the urine so it can be tested for cancer cells. It will be awhile before results come in. I can’t help but wonder if I’m one step closer to going back into chemo with this new development.

Let’s Talk About It - I’m in another book!

The Cover of "Let's Talk About It!"

Thought I’d post the great news that a new book specifically designed for young adults with cancer will soon be available.  Earlier this year I was asked to write about how I was diagnosed with metastatic breast cancer by Darren Neuberger. He’s the “guru” in charge of putting this book together. It was his idea and I think it’s a GREAT one. I wish I’d had something like this to read when I was diagnosed. Because my situation was so unique I didn’t even realize til many years later that I had been relatively alone as far as having cancer connections who were close to  my age. In fact it wasn’t until a conference in Toronto in 2007 that I realized I had been feeling so alone for seven years. It was a Canadian conference for young women with breast cancer and I recall standing in the ballroom in the middle of the first night’s party. I could turn in a complete circle and everywhere all I saw were young women. VERY YOUNG women. It was such an enlightening but also a saddening realization that I came to that night. Not only had I been alone for 7 years battling metastatic breast cancer, but I saw just how many young women are getting breast cancer. I swear every girl in that room looked like she was in her 20’s! I felt helpless and sad that so many beautiful young women were having their bodies disfigured, mangled, and ravaged by breast cancer - mostly by the treatments FOR breast cancer. Seeing traces of scars everywhere really got to me. Maybe it got to me so much because I didn’t have the kind of disfiguring scars that others have. I’d had a lumpectomy where only the lump had been removed from my breast and the area it had been removed from didn’t cause that much of a change in my outward (clothed!) physical appearance. If I look really closely I can see that one breast is a lot bigger than the other and I can really tell when I try on a shirt that has horizontal lines! Everything is normal until you hit the visual line of the boobs….then it wows and curves in wonky ways and the lines aren’t even close to being straight I had felt that every time I looked  in the mirror all I saw were scars. Holes in my forehead from the halo; a scar at the base of my throat from the neck surgery; a scar on my breast from the lumpectomy; and a scar on my hip where they took a bone graft for fixing my neck. When I saw hints of the scars that other women had at that conference it really affected me. I felt such empathy for them. I was sad. That’s the best way to put it. It really made me sad. Sad that so many young women ARE getting breast cancer and that they are having to go through losing one or both breasts. Even having reconstruction can involve taking skin grafts from other areas of your body so you get ANOTHER scar! I was sad but I also saw sheer joy that night and throughout the weekend. There were a couple of parties in the main ballroom of the hotel where the conference was, and you could look around and see a ton of young women having FUN! They might have had breast cancer or were going through treatment, but dammit they were having fun. There were smiles everywhere, laughter, hugs, dancing and exchanging phone numbers and email addresses. Meeting someone “just like you” can change your life.

At that conference in Toronto I met a young woman quite by accident. I was in a workshop that turned out to be something totally different than what I envisioned. Funny that I chose the word “envisioned” because we had to “visualize our future self” and find out “what our future self told us”. I was not in the mood for this kind of workshop and when we were told to pair up with the person next to us and share what our “future self” had told us I thought “Oh…..shit”. I looked at the girl to my right. She looked at me, and I said “Sorry but I”m not into this”. Turns out she wasn’t digging the workshop either! We started asking each other questions about ourselves and within seconds we found out that we were both diagnosed metastatic at the age of 35, were both Her2+ and we both had thought we were gonna die because of breast cancer. I was much further along in my cancer battle than she was. In fact I think she was still going through chemo or just about finished. It was the last workshop of the day and we stayed and sat in that room for over an hour afterward sharing our story with each other. I had finally met someone like me, and so had she. I wish I’d been able to meet someone years ago, but this young woman came into my life at just the right time. She came into my life when SHE NEEDED ME. She saw that you are able to live with metastatic breast cancer, and you’re able to live for a long time. Until she met me, she thought she was not going to be around for much longer. When she saw what Herceptin had done for me it gave her hope. Hope is the most powerful gift we can give to others who are going through a cancer experience. We need hope to see that WE CAN GET THROUGH IT. Everything IS going to be ok. If she can do it, so can I. My new friend tells me that day changed the way she looked at her cancer diagnosis. Her husband even emailed me off my website to tell me what a difference I had made. Wow. I really did help someone, and you know what? She helped me too. Even though she was in the early stages of her cancer experience she had a diagnosis similar to mine and was the same age I was at diagnosis. I had NEVER met anyone that even came close until that conference. She tells me she didn’t really feel like going to the conference that day. It was her wedding anniversary and she didn’t feel like dealing with more cancer “stuff” but her husband said to her “You never know…you might be sitting next to someone just like you.” And there I was. Sitting right next to her. I still get goosebumps when I tell that story. It was meant to be that we would meet. Maybe we did fit in with that wacky workshop after all because she may have seen her “future self” in ME, and realized that she was going to be just fine. It was like she was able to breathe again. The air had no longer been sucked out of her like a cancer diagnosis often leaves you feeling.

We’ve since travelled together to other conferences and we keep in touch with email. It was such a gift that I found her that day. She’s given me just as much as I gave her, and that’s why this new book will be valuable to young people diagnosed with cancer. There are stories from all ages about many different cancer diagnoses and I’m sure that it will make a difference in the lives of many other young men and women when they read the stories, and perhaps, find someone “just like them”. Maybe they’ll get their breath back. Maybe they’ll get the kick in the pants they need to pick themselves up and keep on fighting. There’s a lot of “maybes” but it is FOR SURE that many will be positively affected by this book. It should be available in a month or so. The information on where you can get your copy is posted below

The book is called “Let’s Talk About It - Inspiring Stories from Young Adult Cancer Survivors” and it was compiled by Darren Neuberger. My face is one of many on the cover, and my story is inside along with 39 others from all walks of life and cancer diagnoses. Here’s where you can find out more: http://letstalkaboutit.viviti.com/ and order your copy!

I’ve got a new tumour (with Ahnold accent)

So much for me writing every day!! That lasted what….4 or 5 days?  No one reads this on a regular basis anyway, and if they do I don’t know about it cuz no one is making any comments! Hello? It’s me - Lisa. Is anyone listening?

Yes, I have a new tumor. And I’m telling everyone about it on my blog. I’ve told a few people here and there over the last couple of weeks since we found out but don’t really feel the need to shout it from the roof tops. I can write about it here because if you’re reading this I think you likely do care or are interested in what goes through the mind of a frequent flyer in the “Cancer World”.

Back to my tumor. I have a brand new one! Isn’t that exciting??! (said with great sarcasm) This is cancer we’re talking about by the way. A new tumor that is TWO centimetres in size, and that’s fairly big for a new tumor. It’s in the lining around my liver. The great thing about this is that it’s not IN the liver. The wacky thing about it is there are NO other new tumors (I hate spelling it with a U..sorry) in my body and none of my many other metastases (cancer spots) have grown. Some have even shrunk. Makes no sense. Cancer doesn’t make sense. Why is it that even though I don’t have to go back into chemo that I’m kind of on the freaked-out side about TWO CENTIMETRES?!! Not quite an inch, but this is cancer we’re talking about here. I have new cancer in my body and I’m scared that this is the start of sliding down the slippery slope. Christmas and New Year’s is a hard time for me because I find it difficult to get excited about a ”new year” that may bring the spread of my cancer and possibly the end of my life. I’ve seen far too many friends die in less than a year who were perfectly fine one year earlier. It could be me. I could be next.

I’m being followed even more closely now with scans to keep an eye on things. If my medical team notices any new growth that they feel is the start of cancer progression, I’ll be tossed into chemo to try and kick it before it gets too wide-spread. I hate chemo (really Lisa?! No one likes chemo you selfish wench!). I don’t WANT to do chemo AGAIN. I did chemo once a week for six months. That was enough thank you very much! I shouldn’t bitch because many of my friends have been going through non-stop chemo for an extended period of time and I don’t want to be a baby. Everyone says I’m “so strong”, “so courageous”. I hate to be the one to break it to you, but you might as well hear it from me. I AM NOT INVINCIBLE. I am NOT Wonder Woman. I’m just a cancer patient who happened to get very lucky. So lucky you can’t even fathom how lucky I am. Statistically I should have been dead about  seven years ago because the median survival rate for someone with cancer as widespread as mine is 2.5 years. I’m over 9 years.

I need support, but sometimes I really don’t need encouragement or anyone telling me that I’m “the strongest person they know”, that “you can do it”, or other ego boosting stuff like that. I’m just like YOU. I’m not made of some invincible material that will stop the cancer from ripping through it and winning the race.  I’m doing the best I can with what I’ve been dealt and some days I wallow in my own self pity and sad thoughts about the reality of my life. I feel like I’m standing on the edge of a very high, narrow cliff trying to keep my balance. I’m walking a tight rope made of 8 pound test fishing line that can’t possibly hold me for much longer. Tiny threads of hope that I cling to like string algae clings to everything in my backyard pond, billowing out with each wave. I’m hanging on desperately and not ready to fall into the cancer abyss I was once in. Somehow I got lucky way back then and scratched my way out of it, dragging myself away from the cancer that had taken all ten fingernails and turned them into throbbing blood-filled and useless shards that remained bandaged for well over six months after chemo ended.  

I’ve been sensing the dread of a new year for the last several weeks, but even more since I got the news of my new tumor. Some days I feel like I should send out announcement cards proclaiming “I’ve got a new tumor!” with the joy that people have at the arrival of a new baby. Trust me, there’s NO joy in hearing that you’ve got a new tumor. It means that maybe I’m not going to win this contest after all. I’m still in the ring but cancer could get a TKO after all. I’ve had my black eyes, bruises and broken bones over the last 9 years of this boxing match and I know I can take a lot more. I just don’t WANT TO! I’m being selfish and greedy,  but I would really like it if the cancer could just stay the way it has been and continue to live WITH me and not against me.

Right now I really would just love to throw myself down on the floor like a two year old and have the biggest temper tantrum ever witnessed on the face of this earth. The frustration builds up inside my control freak mind and many days I wish I could be like a toddler who can’t express themself in words so they just throw themselves down on the floor or stomp their feet and scream their lungs out, inconsolable until it’s all out of their system. The words that keep going through my mind, quite simply are: I DON’T WANT TO!!! I don’t want to go back into chemo. I DON’T WAAAANNNTT TOOOOOO!!

In the meantime I’ve got a couple months of freedom to enjoy life and then there will be more tests to see what’s going on inside this beat-up old cancer carcass. If you think I’m tense and freaked out now - just wait…