Wednesday, November 16, 2011

She Died - 11/16/11

My MBC sister with the same name as mine died on Sunday. I was not prepared to hear that today. My oncology nurse told me that even though it was against policy. She thought that I would want to know. I'm glad that she broke protocol, and it goes to show that with oncology nurses, it's not just a job. They really do care about their patients. She asked that I not say anything to anyone at the treatment center, and I didn't. Of course, it's on my Blog now, but someone would have to be totally beyond Einstein to figure out who told me.

I teared up immediately. She was younger than me. She had two boys that she loved dearly. The last time that I spoke with her, she was going to ask for a break from chemotherapy because of the fluid build-up in her lungs and stomach. She had a drain put in for her stomach, but the lungs were giving her the most problems. She was on supplemental oxygen and in a wheel chair. I thought she would come back around after a break. We both hoped for that. We both prayed for that. What happened? All we know is that she checked into the hospital on Friday, and before they could get her into hospice care, she died on Sunday.

I'm devastated. All I can think about is her beautiful bald head and that smile on her face telling me about her faith. She pulled me in. I used her faith to comfort me selfishly. She died, she died, she died . . . . I kept repeating it to myself, because I didn't want to believe it. Selfishly, again, I felt my own immortality.

Today was supposed to be a short day, but that didn't happen. Stability is present in my bones, but my liver and lungs have several new tumors. One of the liver tumors grew from 9 x 8 millimeters to 11 x 11 millimeters. I also have new tumors, "pulmonary nodules" and "lymphangitic spread of neoplasm" in the right lung, whereas previously, only the left lung was involved. One of the lung tumors grew by 1 millimeter (from 10 x 7 millimeters to 10 x 8 millimeters). Apparently, my shortness of breath, dry cough, fever, headaches, and neck and back pains may have something to do with these inflamed pulmonary nodules in my lungs.

Again, because of progression, I am kicked out of the clinical trial. I offered my research nurse my remaining seven days worth of Xeloda pills so that someone else could benefit from them. She said that she would be glad to take them, especially for a patient who didn't have insurance. The pills are paid for this cycle, and I would only have thrown them away, as I'm sure the drug company will not take them back. They are expensive a$$ pills that I've only been on for less than two months!

I'm on a two week hold to start the next clinical trial. I'll either get the tried and true Ixempra (one IV infusion, once every three weeks) or the trial drug LY2523355, which involves giving myself injections at home. I'm hoping for Ixempra, because it's easier. I don't mind shooting myself in the stomach with a needle, but I'd rather not do that, lol. My research nurse said that I could have someone do it for me. Now is the time to enlist some gullible friends, lol.

Because of my lung function, today I was given an IV infusion of steroids and an antibiotic. I was also given a prescription for a Z-pack of antibiotics (2 pills on day one, and then one pill per day for the next four days). It was also time for my Zometa infusion for my bones, so I had that, too. My oncologist also wants me to start taking over-the-counter Naproxen (i.e., Aleve). We are still having this ongoing debate about me preferring Advil, lol.

My oncology nurse was assessing my port for my drugs today, when she told me about my MBC sister with the same name as mine. How dare it take her away from her boys! How dare it take away her life! The only consolation is that she has no more worry and no more pain. However, I'm angry all over again! This damn cancer has a hell of a fight on it's hands if it thinks I'm going quietly. I'm fighting for my MBC sister, too, even though she is no longer here. Try fighting Tiger. If she goes down, you're going with her. Stupid Ass, cancer! You really screwed up this time!

End of the Rainbow by McKinley Mitchell:

I went running to the end of a rainbow
Looking for a treasure they said I would find
I found nothing but heartaches and troubles
I'm about to lose my mind

On the way, the load got heavy
And the burdens got hard to bear
None of my friends was there to help me
Left me standing in the middle of nowhere

With a heart full of pain, I was lost
So blind I couldn't see a thing
I couldn't even remember my name
They talked loud and clear

Every word, my ears could hear
In my heart was heavy
I couldn't even move
I just stood there like a silly fool

I believe...I'm going...back home
To start all over again
Left my rainbow behind me
Right where I, I began


Going, going, going, going home
I'm going home
(I'm going the end of the rainbow)
I'm going home
(I'm going the end of the rainbow)
Going, going, going, going home
I'm going home...

Rest in peace my dear, sweet MBC sister with the same name as mine.

Monday, November 14, 2011

Scan Anxiety - 11/14/11

I don't really freak out when it's time for my scans. It's an unavoidable necessity, and that's how I try to look at it. Of course, if I didn't have to have the scans so often or at all, it would be better, but you can't wish for something that you know is not going to happen. I would be lying if I said there wasn't some anxiety associated with having scans. I don't get to the point of refusing to go or getting sick over the thought of it. I go into the machine hoping for stability, if not regression, and no more progression. What bothers me is that I've been hurting a lot lately. Pain has always been a good indicator for me that something is not right. The pain is usually in the neck, head, and shoulder areas and sometimes on the right side of my back, below my rib cage. So, I'm thinking that I won't be given a stability diagnosis this time. The glass is half empty, pessimistic attitude is not a good one to have, but pain makes you irrational at times. For all the side effects that Xeloda is putting me through, I expect it to be working. Pain tells me that it's probably not.

I've stopped drinking the contrast from the oncologist's office and just show up to drink the yummy lemonade contrast an hour early for my CT scan at the imaging office. That has solved one problem. It's hard to get two bottles of the chalky, vanilla flavored (nope) contrast down. Both still give me stomach issues afterwards throughout the day, but at least, the lemonade contrast is tasty and tolerable.

I've also started to allow the technicians at the imaging office to use my port. I'm very leery of just anyone using the port, but the last time when they couldn't use the veins in my one good arm after the technician from the hospital for the bone scan had exhausted them, it wasn't so bad. Coming away with only a slightly bruised and sore arm is a plus.

I've also warned them ahead of time that, when they inject the dye in the vein or the port, they have to do it slowly so that it doesn't burn. Having scans every 3-4 months has taught me a lot about how to make these sessions go more pleasantly.

Laying down in the machines isn't that bad. The CT scan doesn't take too long. The bone scan takes over an hour some times. I'm not claustrophobic, and I usually just rest and relax while I'm in the machines. The top plate of the machine for the bone scan gets pretty close to smashing your face in, but eventually, that fear eases up, too.

I'll have two scans tomorrow. I'll go in for the radioactive dye injection for the bone scan, and then there's a three hour wait until I can be scanned. In the mean time, I'll go and drink the lemonade contrast, have the CT Scan, where they'll inject another dye contrast. Afterwards, I'll go back and have the bone scan. On Wednesday, I'll get the results from my oncologist.

Doesn't sound too bad, does it? So where does the anxiety come in? The interruption of a normal day, waiting for the results, the sticks in the vein and the port, dealing with the stomach issues afterwards, and the question of what my body is doing this month wears me down mentally. If it's progression, it's on to a new treatment regiment, with its unknown side effects. If it's stability or regression, it's a continuation of the current treatment regiment and its known side effects.

It's such a relief to be done with scans at the end of the day. I know that I'm free for another 3-4 months. I hope these new pains are scar tissue, new bone material building up and filling in the holes from the cancer eating through my spine, pelvic, skull, and right clavicle. I hope that my liver and left lung are benefiting from the Xeloda. They were the problem children from the last CT scan. I want a good report. I really do. But I just don't know. I will not know until I see the oncologist on Wednesday. Until the results, it's constantly on my mind every time my oncologist looks at my medical chart and announces "it's time to schedule you for your scans."

No food or fluids are allowed after midnight tonight. No problem. I'm usually out by 9:00 p.m. most nights any way, lol.

Thursday, November 3, 2011

Three Miles a Day - 11/3/11

I can remember when three miles was barely a warm-up. I can remember when I didn't get into a smooth, running groove until six miles or so, and I could hold it if I was fueled properly for 26.2 miles. But for the life of me, I can't remember the beginning of my running career when three miles was a challenge. And, really, I should say one mile is a challenge. I've begun training (again) to get my energy and oxygen deprived body accustomed to walking/running every day. The mileage isn't important right now. That will come in due time. But I have to relearn how to move every day. And I have to relearn that lesson with less oxygen, low blood cell counts, fatigue, and pain.

It's hard. It's frustrating. Nevertheless, I am determined. I keep thinking about what I once could do and not totally focusing on what I can do for now. November 1 was easier than November 2. I'm hoping today will be easier than yesterday. It's just three miles. A lot of people who don't train can go out and walk three miles. A lot of people walk effortless for one mile. I see them every day as they pass me walking from the parking lot to the various State Offices in the downtown area. I can remember when co-workers commented on how fast I walk. Now I sweat and pant desperately for air as I trudge the one mile, trying to keep them in sight. Looking ahead, I'm constantly thinking, four more blocks, three more blocks, two more blocks . . . . Did they move the building, lol?

My partially numb left foot may be an advantage as I rebuild the mileage. The tips of the toes tingle, but the neuropathy has pretty much numbed the foot from mid-foot to the toes. The tingling is irritating, but, so far, it doesn't hamper being on the feet for long periods of time. I physically get tired and want to sit down before my legs and feet specifically give out. That's a good sign that my legs and feet are up for the challenge, but it's a bad sign that my body in general is in poor condition.

Yesterday, I could only walk the three miles. I had a fever and neck and shoulder pains. I was so cold on a bright, sunshiny day, even with a hat and two long-sleeved shirts. I saw runners out in shorts and short-sleeved shirts, and I envied their even pace and smooth strides. Surprisingly, the three mile walk was only about five minutes longer than the three mile run/walk the day before. The major goal is to finish the three miles under an hour. It's not much of a goal, but it's attainable and doesn't stress me out too much. On Tuesday, I finished in 53 minutes, and on Wednesday, I barely made it in 58 minutes, picking up the walking pace in the last mile to my townhouse. I plan to get the three mile course I've mapped out under 45 minutes, and then I'll do a 5K to truly see where I am.

The 5K has always been my least favorite distance. I think it's because I always had problems just going out as fast as I could and holding it for 3.1 miles. According to my spreadsheet, I've only done three 5K races. My PR for 5K is 27:17 in 2004. My last 5K in 2009 was 31:08. I can't touch either one of those times now, but if I can get to 45 minutes, I'll be happy. And then I'll have to tackle four miles, five miles, six miles . . . . But right now, three miles is about all I can handle.

I can run for a block before I get dizzy from lack of oxygen. It takes me two blocks to breathe comfortably and then I can run another block. I'm hoping that as my body becomes accustomed to surviving on less oxygen that I can run two blocks and walk one block for recovery. Ideally, I would love to get to the point where I can run a mile before taking a walk break. I've mapped out a pretty flat route, so that I won't have the added challenge of tackling an uphill climb. That's coming from someone who would use hills as speed work, because she hated running on a track for intervals. Wow! Things have really changed. Now I walk all hills, and I love 12 or 24 hour races on a track, because I'm only 1/4 mile from my drop bag and a camp chair, lol.

The best thing about my three miles a day routine is that I get to be outside. It makes me feel better mentally to be able to still move although I am incredibly slower. It's raining and very cold today, but I don't care. I'm still a runner at heart, so a little wetness and coldness are not going to scare me off. I'll still be outside on a beautiful, rainy, and cold day, dressed like I live in Alaska, lol.