Survivors Weekend
I have my young adult cancer survivors weekend starting this evening. I'm a little nervous about it, being with complete strangers, but I'm going to do it anyway. Its nice to know pre-cancer Jen would never, never have gone. Post-cancer Jen does't want to go, but can and will. :)
Sunday morning mom and I leave for our cruise. Its been such a trial to get it arranged I'm not even very excited about it. My expectations are quite low so basically anything will impress me at this point.
I had physical therapy again this morning and once I told the trainer I was still sore from two days ago, he went easy on me. My regular PT Judy was making me do reps in the space of 2-3 minutes. My stand-in Chad had me do 10-15 reps. THAT I can do. Except a hip thing where I couldn't get to 10 without pausing to catch my breath. Again with the fifteen pounds, too! I must say the machine I'm on is nothing like one found in a gym. But if it was in a gym it would be covered in cobwebs. One workout on this thing is plenty to convince you not to do it again.
I took a four hour nap today and I'm still tired. Have I mentioned I have to share a hotel room with a stranger for two days? Yeah, like I'm going to sleep. The good news, or maybe bad news, is that they've roomed me with another bad sleeper. SHE doesn't sleep until 5am. I wake up at 3:00 and go back to sleep at about 7:00. It will be like playing tag: "Okay, I'm awake for my shift, you can hit the hay."
PT and Cruise Part II
I had my second PT appointment today. I'm stronger than last week (the PT repeated the same strength exercises) but my right leg is definitely lousy. The PT points to my operation and the location of my scar. Basically since it's across my whole chest... (confusion)...somehow its impacting my leg-strength. I was working my butt off on one particular machine. I was shaking from exertion (looks like I spelled it wrong) and I came to find out later I was moving 15 pounds. FIFTEEN!!! And with my THIGH, which contains arguably the strongest collection of muscles in the human body. Sure I was fine at the beginning, but after about 30 reps I was ready to quit. As if one can quit physical therapy.
And to further prove I'm weak I could barely carry my EMPTY suitcase from my condo to car and then from car to parents house. Good thing it has wheels. Why the suitcase? Well, mom and I are somehow booked on another cruise after knashing of teeth and cries of "our travel agent should be locked up in a mental hospital". Even if I've learned nothing, I now see its better to do as I've done in the past-- make travel arrangements online.
Anyway, we're now on the
Norweigan Cruise Line, on a ship called the "Jewel" which is not quite a year old. We're going to Roatan: Honduras, George Town: Grand Cayman, Ocho Rios: Jamaica, and Great Stirrup Cay: Bahamas. Mom and I just NEED to get away. More importantly, we need things to go our way for a few minutes. My luck HAS to change at some point. I'm getting sick of counting my blessings and starting every sentence with "Well, at least..."
The Lymph Node
I met with Dr. Bhargava today, mostly to talk about my unusually enlarged lymph node. I'm thinking to make it easier, since I have countless lymph nodes but only one who's calling attention to himself, that I'd go ahead an name it.
So Fabian is most likely benign. We're guessing here since there has been no change in 6 months and after extremely intense chemotherapy, but it probably isn't preparing to spread. There are naturally no guarantees, but I was honest with my doctor and told him I fully expect Fabian to give me a recurrance of cancer in the next two years. He (my doctor, not my lymph node) shook his head in understanding and spent a lot of time explaining that Dr. Osteen, my surgeon, didn't take Fabian out because it was higher up than the surgical area, and its a good thing that it didn't change in 6 months, etc etc etc.
I'd like YOU to know I still believe I'm going to get cancer again in the next couple of years, but I think after a few more CT scans I'll start to feel better about it. Things are still too recent. As Dr. Bhargava said, the most important thing is time-- time for my body to settle down, and time to see exactly what will happen.
I felt different walking down the halls of Dana Farber today. Its only been 2 weeks, but I didn't feel QUITE so much like I fit in. Its a good thing. I don't feel as I did a few weeks ago-- like I'd been laid off from Dana Farber. Today it felt more like a familiar place, and not my home away from home.
PT and Cruise
Physical therapy is so simple, yet so difficult. I'm supposed to do everything very slowly so I don't cause injury, but even lifting my leg to the side and then the other leg to the other side... well, its just plan hard. I can't believe how weak I am. In therapy friday, the woman said "Hold out your arm straight and don't let me push it down." My arm went down to my side like I wasn't even trying. Good grief! She said I'm not too far gone though. I'll go 3 times a week for about a month, she said, and should be in good shape by the end. Then I can graduate to a gym.
I got the update on the cruise this morning--and of course our cruise next week has been cancelled. My luck has been spectacular! We basically expected it after seeing pictures of the ship. We're taking a "what will be will be" attitude towards the whole thing. We're even joking that we'll use our new snorkeling equipment--purchased just for this cruise--will be put to good use in my dad's backyard fish pond. Oooo, koi! We're greatly dissapointed, but there's not much that can be done. Worse things could (and have!) happen :)
PT tomorrow
I'm excited about my cancer retreat next weekend, but I learned I have to share a room with a complete stranger. Not cool. I'm trying not to let it bother me, but it does. I'm not sleeping well at night, plus I'd already planned instead of bringing my inflatable mattress proper-upper I'd create something out of suitcases and random stuff around the room. Now I'm going to look like a freak building some kind of fort. And I'm waking up at 3:00 every morning and watching TV. I can't do that in a room with a stranger. I'm going to have to lie there and look at the ceiling, or haunt the halls of the hotel. GREAT! You know I'm feeling better when I start complaining. :)
I have my first physical therapy session tomorrow and my body knows it somehow. My side is hurting me, which hasn't bothered me in months. As if to say "I'm not doing anything remotely resembling a sit up, so don't even ask." I'm looking forward to it, though. I think it will help make me feel better in the long run.
The cruise ship my mom and I are going on in 2 weeks had a
fire this morning and someone died. Sad story, but my first thought is I wonder if that impacts our cruise at all. I mean, obviously some kind of investigation will have to take place, then room reconstruction. What are the odds it would be the same boat?
I thought I'd end by quoting my favorite sign. There are
Kiducation goodwill boxes around town for clothing donations, etc. The motto is "We turn used clothing into new kids through education." I find a hundred things wrong with that sentence, but I just love it. They make clothes into children. Or fabricate children out of clothes. And not with black magic, but with learning and understanding. I love this country. :)
Accepting
I'm noticing that not as much hair is falling out anymore. I'd say I lost 50%. I still get hair in and on everything, but it just seems like the hairball at the bottom of the shower is shrinking :).
I've "come off the roof" as far as the lymph node is concerned. I can't remember now if my doctor said it was there in my last CT scan or not. I'll have to ask at my next appointment. Mom thinks it was there in October, but the scan showed it hasn't changed since then.
What I've come to terms with is that this fight against cancer didn't take the "fight" out of me. I'm exhausted as a drug side-effect, not because I pushed myself too hard. So if my next CT scan shows the pesky enlarged lymph node still there, I'll be okay with it. If the cancer returns in a year or whatever, I can just restart the push.
I'm learning to say "the cancer is gone" which is strange, because I found saying "I have cancer" was much, much easier.
I start physical therapy on friday, and set up a gene therapy session for next month. Basically a genetic counselor and my gastroenterologist will meet and go over my family history of cancer and they can see whether I have certain mutations or predispositions. I'm most concerned for my brother. His odds of getting prostate cancer are sky high, and I can only imagine how he feels knowing his sister had cancer already.
But I'm feeling better and able to leave the house a bit more. There are some days when I'm able to skip my nap. I found that food isn't as against me as before. I'm drinking orange juice now (gasp!) and I can eat past 7:30 without being sick.
And today is the first day of spring!!
CT Scan: All Clear
I had a CT scan yesterday and was suprised to get the results a week early. My mom and I reacted very differently to the news. The doctor said there was no cancer on the scan and my mom hugged him. All I heard is that I have two unidentified things on my liver and I have an enlarged lymph node near my esophagus.
I know I should be happy. Over the moon. I'm just not.
I don't feel like I got an "all clear" even though I did. As mom said, if my doctor isn't immediately concerned, then I shouldn't be. But then if I'm not concerned about my body, who will be? The good news is that I have another scan in 3 months, and likely 6 months after that. So they can keep looking at these THINGS. I did not expect to hear about anything at all, which is maybe why I'm reacting the way I am.
I'll have to schedule day surgery in April to get my port-a-cath removed (!!) and I'll have to get another endoscopy. I guess that's part of it... it's not "over" for me yet. Everyone else can maybe breathe a sigh of relief but I'm not feeling it yet. I suppose these things take time.
I'll have to go back every two weeks for awhile to keep getting shots for my blood. I got the shot for red yesterday. My whites are dropping but I haven't had to get a shot for awhile.
I'm not dealing with the change from patient to non-patient very well. Not surprisingly they have a billion programs for women recovering from breast cancer ("How to rejoin life") but nothing for anyone else. I'm not afraid to move on, I just don't know HOW. I'm in limbo. Not a patient anymore, but not prepared to scale tall buildings yet, either.
Well, I'm going to call to set up my physical therapy now. I guess that's one thing I have control over! :)
CT Scan Weds
Wow did Saturday wipe me out. I'm just starting to recover and its been three days. I think I fell asleep standing up yesterday. :)
But I still don't sleep well at night. I start worrying about 8:30pm over the fact I'll have to go to bed in a few hours. Anxiety is killing me, and the best sleep I get is at naptime. This is just what I did after my surgery in August, but not quite as bad. I'm awake at 4am but don't need to get up and wander like I did back then.
I tried lying flat in bed this morning just to remember what it feels like and I accidentally fell asleep. I woke up with reflux. STUPID!! I know better. I know I have to sleep at an incline but its just not that comfortable sometimes.
I've got my CT scan tomorrow which I'm not really looking forward to. I'm not nervous or frightened, I just don't want to do it. I'm sick of doing things I don't want to do. But I guess that's life. Dealing with things you don't want to deal with.
Busy Day
My cooking club met today. It was at my parents house so I didn't have to drive. What an exhausting day! I didn't dare sit down while everyone was here for fear I wouldn't get up again. I just pushed myself to keep going and I actually feel pretty good. I won't move tomorrow, but it shows me that I CAN be active.
It was so nice to see some of my friends!! I haven't seen anyone in months. Mom jokes that we spend too much time together. Basically she's been in confinement with me for three seasons. We're just starting to come out of it. She went off shopping by herself today for the first time in.... I can't even remember how long. She was always afraid to leave me by myself when I wasn't doing very well, and truthfully I didn't like being alone AT ALL for any length of time. I was very clingy.
I don't drive much still. It feels like I'm playing a video game when I'm behind the wheel. It kind of shows you where I am cognitively. But I AM getting better. Things are starting to come back, just as my doctor said they would.
I don't think I mentioned, but mom and I are going on a celebratory HOLY-SHIT-ITS-OVER
cruise the first week in April. The CT scan being the "end" just doesn't do it for me. I can't go on an adventure or sight-seeing vacation, but one where you can do nothing but stare at the waves... that's my speed. :) And I'm going on a young cancer survivors
retreat weekend at the end of this month. Supposedly we get to go to a
spa and stay at the
Park Plaza. It's about damn time my cancer starting getting me the freebees. :)
Oh, I just added a link (on the right) to my cousin Alexandra's fundraiser for the American Cancer Society. Thank you, Ali!
Now that I've sat down, I've crashed. Time to go lounge on the couch...
Settle Down
Mom has gone into clean sweep mode and is starting to toss old chemotherapy papers and has segregatated medications I'm not taking anymore into a bag in the closet. I CAN'T BEAR IT! I won't let her throw the meds out because I might need them (no I won't) and what if I need those papers (I won't) at some point in the future?
I had my doctors appointment yesterday where I was able to ask-- "What are the odds that you'll see anything on the CT scan?" I really needed to hear the answer that he'll be very surprised. We can't rule it out, but c'mon. The surgeon cut it all out so all I've been through was to make sure stray cells were killed and to hopefully clean out my lymphatic system. I had two lymph nodes with cancer meaning it was starting to move but really hadn't yet.
And I was talking with mom over dinner tonight- in my heart of hearts, I honestly can't believe I'll never get cancer again. I don't think its an unusual feeling for cancer patients to have, but I'm only 31. Most people don't get cancer until they're 50, 60 or so. And if I'm clean for 10 years, they'll stop checking me! GASP! Maybe I can insist they keep checking me. Maybe the paranoia will wear off.
My doctor also told me to cut myself some slack. Its only been 2 weeks since I stopped chemo and the drugs are still in me. He said in 2-3 weeks I can start trying to "push myself" but not yet. Another anxiety I've been carrying around... I should be DOING more but I CAN'T. And now I know, I shouldn't be doing more. Settle down, freak. I really need to hear these things from the doctor. Its so hard to really know what to do. :)
Random Thoughts
I don't have a whole lot to write about, just some little things. I was incredibly touched to learn my cousin Alexandra is participating in a "Relay for Life" with her college hockey team and proceeds go to the American Cancer Society. And she's playing in my name. How sweet is that!! I wish I had a link to her site, maybe my Aunt Jeanne will post it?
On a somewhat related note, my very good friend Lisa B is participating in the March of Dimes in memory of her daughter Lauren. I hope you'll visit her website at
www.walkamerica.org/LisaBradbury to learn more about premature birth and how you can help support the March of Dimes.
I have a doctors appointment tomorrow, and my CT scan is next week. I'm not nervous about the scan, I'm nervous about the RESULTS. I'm trying not to think of it much. I know if the results aren't good, I can keep going on this journey. In the meantime its nice to be able to eat when I'm supposed to (every 2 hrs) without it being a struggle and a chore. I'm not sleeping well at night, but assume its just temporary. I'm sooo tired still. zzzzz
I'm very upset today about
Dana Reeve's death (Christopher Reeve's widow). She was diagnosed with lung cancer about the same time I was diagnosed with stomach cancer. Hers was found by a fluke like mine, and also like me, her cancer had been there about a year. I'm just so shocked by her death since I'd felt a bit of kinship with her. I'm convinced that the cancer didn't kill her, but the chemotherapy did. You truly have to be strong enough to fight the poison.
I learned how to do the sudoku puzzles that seem to be a big deal now. I actually prefer them to the search-a-word I'd been doing. If I may be blunt, I now SUCK at search-a-word. All you have to do is find and circle the word, and I can't do it anymore. My mother took my book and pen away last night because I was bitching so loudly about how crap I was at it. A six-year-old could kick my butt. Stupid brain!
Another Shot
I got another shot today, this one for red blood cells. The shot last week for white blood cells appears to have worked, which is good.
The shot really stung this week because the nurse (not my usual nurse) gave it to me too fast. It reminded me of a lady in the waiting room last week. She was probably about 55. She overheard that I was getting a shot and asked me nervously if it hurt because she was getting one too. I wanted to say 'Well ma'am, it *IS* a shot' but I wasn't so sarcastic. Who asks if a shot hurts? Of course it does!
I'm feeling better now, mostly just very tired. My joints ache, but that's because of the shots. They get the bone marrow working overtime.
My oncology nurse Nina told me I didn't need an occupational therapist because they work mostly with coordination issues, and my chemobrain will eventually just clear itself up. She said I'm being too hard on myself expecting that just because treatment has ended I'm supposed to be all 'normal'. In fact, Nina told me not to expect to feel good until June. At least I have a target now. June, as opposed to say, friday. :)
I don't have the energy to do the physical therapy yet, but I hope in another two weeks or so I can start that. It will probably be a case of "physical therapy then 6 -hour nap". After all, I only went to the doctors today, and I just got up from a 4-hour nap. :)
