Low iron

Found out yesterday prior to my treatment that the nurse decided to test my iron since my hemoglobin counts were falling over time. My iron was low, so I had a 15 minute infusion of iron before I got my meds. I don't feel any different today, but I'm not sure I'm supposed to. Nevertheless, I guess that's another thing they will be watching over time.

One of the assistants decided to take on my nutrition consult problem (first appointment wasn't until May 25) and got me an appointment on April 6 following my chemo treatment. Apparently, each department has its own set of nutritionists (or at least the oncology and radiology departments do) so the assistant contacted radiology and got me an appointment there. I wonder why no one else suggested that...

We have also discovered that my going in for bloodwork on Mondays is a waste of time. The past two weeks I've been working from home, so I didn't have blood drawn until Tuesday morning. We got into treatment faster than if I did the blood draw the day prior. So, no more double sticks. I'll have my blood drawn through my port on the day of my treatment.

I'm wearing my new work slacks today and while they fit, they certainly show how thin I've gotten. Now what happens if the nutritionist is able to get me to gain weight????

The rain has finally stopped and Ed continues to suck up water in the basement. We've experienced our worst flooding in 15 years. The water just keeps coming in from all over the basement, and he's having a difficult time keeping up. He hopes to get it all up today, and there is no rain in the forecast for at least a week. Even when it does rain again, with any luck it won't be four inches worth.

Happy last day of March!

More thoughts

Well, I thought I would feel better after having vented all that, but I don't so much. I suppose the fact that I have cancer is just hitting me right in the face. I know, it sounds ridiculous. I've known I've had cancer since December 2005. The difference is that it didn't really show. For example, I was in various casts following my initial surgery for about eight weeks, but most of that time I was at home, and no one saw me other than friends and family. When the hair fell out on the back of my head following radiation, I couldn't see it unless I looked in the mirror -- and believe me, I rarely looked in the mirror. Now, I see people looking at me when I'm hacking away and can't stop, and I looked in the mirror on vacation and didn't recognize myself. I finally faced the fact that I didn't know who I was any longer. My hair didn't look like me, my face doesn't look like me, and my body certainly doesn't look like me. It's like a slap in the face, reality looking back at me. It's scary.

So, I cut my hair, finally bought a few new pairs of pants that actually fit, and made some appointments to try to deal with the cough. The pulmonologist wants me to try two more things (his last tricks in the bag) and recommended that rather than returning to the thoracic surgeon at MSKCC, I seek another opinion about whether surgical removal of the tumor is possible. Prior to that, however, I'll be meeting with the pain management doctor to arrange to have the phrenic nerve numbed. Maybe that will give me some relief from the coughing. I'll find out on April 8 what the procedure entails and when we can arrange it.

In the meantime, I'm trying to get moving again. I worked from home this week, so I finished our taxes, got my financial documents back in order, did some weeding last weekend when the weather was warm (today it's 40), finally put the Christmas ornaments away (yes, believe it or not), got some housecleaning done, and visited with friends. I'm trying to catch up on my e-mails and get back to this blog. Now if I can just make some time for doing crafts...

I'm still not happy with the way I feel from this chemo treatment. The fatigue and the muscle cramps are especially trying. I don't know whether the treatment is making the cough worse or if the pollen is now contributing to the irritation. I'm not gaining any weight, but I've leveled off again. Let's hope this is the final level. I don't want to buy clothes again.

I know that I'm complaining, but I actually think it's time. I feel as if I've been trying to be the happy, positive cancer patient for so long that no one has taken my few complaints seriously. It seems to be true that the squeaky wheel gets the grease. We'll just have to see what happens from here.

My pulmonologist gave me a referral to another thoracic surgeon, but we'll hold off on that until after the numbing procedure. He also gave me a referral to a nutritionist, since the next available appointment with MSKCC's nutritionists isn't until May 25. Can you believe that??? In the meantime, I'm trying different foods to see how they taste, although that seems to change from one day to the next. Chocolate and chocolate cake is still out, but brownies seem to have turned around. I suppose it's simply trial and error at this point.

Thanks for your patience and for "listening" to all this venting. I'll try to get back here in a few days.

Thoughts

I've been reading quite a bit today about people's perceptions of themselves with cancer. All have written that they don't like to be called "victims," and one wrote that he doesn't consider himself "brave" nor likes the constant illusions to war: fighting, battling, slaying, killing, etc. I've been giving this a lot of thought. I have to agree that I do not consider myself a cancer victim. I'm a person who has cancer. I am definitely not brave and I do not view myself as in a fight or war. Usually, I'm a person who is partly scared, partly angry, partly sad, partly glad who is just trying to do her best in the face of this new reality.

It's not brave to undergo treatment or the scans. They are just things that must be done. If I don't have treatment, my cancer will grow and I will eventually die. Where is the choice in that? Research is essential because I have to know what my options are, what treatments are left, what new ones are being studied, what is on the horizon. I need to keep on top of the bills, because despite the fact that insurance covers almost everything now, that doesn't mean that mistakes won't be made -- plus, those referrals always need to be requested and renewed. I need to keep an up-to-date schedule, or I would lose track of who I'm supposed to see when and for what. That's not being brave or courageous -- it's being organized and informed.

I don't know where I want to go with all this, but I needed to get it written down. I feel as if I have hit bottom at this point and I need to make some new choices. The cough has reached the point of truly interfering with my life. It interrupts my conversations, makes me very self-conscious, prevents me from enjoying myself at restaurants, on vacations or with other people, and none of the many medications I'm taking really helps. They all do something, but that something is not enough. I've scheduled an appointment to see the pain management doctor to investigate having that nerve numbed again. It's really my last hope to deal with this issue, and I've put it off long enough because I was scared to try it knowingly (last time I was unconscious) and I was in denial about how bad the cough is.

The nurse/case manager from my insurance company recommended that I see a nutrionist. Despite having maintained my weight during our vacation, I've lost another two pounds since then. Because food doesn't taste right, I just don't feel like eating much of it. Today my boss made me go to McDonald's to get a Big Mac, fries and a shake. Although he never brings it up himself, he's worried about the weight I've lost since November 2008 -- about 20 pounds now. I kept hoping that my taste buds would normalize and I would be able to turn this around myself, but I can't believe that anymore. And because so many things don't taste right, I avoid going out to eat both with Ed or with friends -- and that was something I enjoyed.

Please don't ask me if I'm depressed. Ed asked me that question the other day. I don't think I am. I just think I've isolated myself because of all these issues (plus the fatigue and my various aches and pains), and now I've reached the point where I have to start doing something different -- many things different actually. I'm no longer the person I was before I was diagnosed. That's normal, I suppose, but I haven't improved, especially since the radiation in 2008. Unless I want to live the rest of my life hiding in the house, feeling miserable and tired, avoiding restaurants and vacations, I need to make changes.

More on all of this later...

14 weeks down

Yesterday was my 14th treatment on this protocol. I continue to experience most of the intial issues: muscle spasms in my calves, feet and hands; fatigue; some shortness of breath; high cholesterol (although the Zetia is doing a great job getting that down); and some acne.

My cough continues unabated and has been worse since Friday. I don't know whether it was the weather (sometimes low pressure systems make me cough) or an allergy exacerbating the cough, but it's annoying. I spent the entire way home on the bus on Monday trying not to cough -- and that was after taking a Benadryl during the day and a Levsin tablet (which dries me up) at 3 p.m. Of course, the cough by that point was a dry, tickly cough, but it's still annoying.

As such, I have finally made a follow-up appointment for a consultation with a pain management doctor at MSKCC (scheduled for 4/8). We will discuss numbing the phrenic nerve as the doctor did during my thoracotomy back in October. That lasted for five days, but perhaps we can get a longer period out of another one. I won't know until I try it again.

The weather here has changed for the better. After four days of rain and wind, the sun is shining. Yesterday the temperature reached 67 on our way home from chemo and today looks to be a repeat. I hope you are able to get out and enjoy the weather wherever you are.

Happy St. Patrick's Day!!!

Wrote too soon

Unfortunately, my infection is not gone so I have to call my gynecologist again today. We'll see if that means another 7-day round of antibiotics. I also picked up a stomach virus, so I left work early on Wednesday (which I don't recall ever doing in the 11 years I've worked here) and stayed home yesterday. No vomiting, but stomach pains and a few digestive problems. I'm feeling better today, although weak from not eating or doing much.

We are expecting a weekend of rain -- two to four inches in fact. I, for one, plan to stay indoors and do our taxes among other chores. At least it's not snow again. I don't think Ed could stand to shovel another two feet of the white stuff.

Have a great weekend all!

How it works

While I was in treatment yesterday, Dr. K's nurse came in and handed me a chart, which shows how they measure response under this protocol. The dimensions of up to five tumors per organ are added together to get a baseline "long diameter." My baseline from my scans of Nov. 25 was 104. The dimensions of the tumors from each subsequent scan are compared to the baseline. If it exceeds the baseline, I would be out of the trial. My first scans totaled 96 and my second 97, so I'm down 7% from the baseline but up 1% from the lowest measurement. Hope this makes sense.

I finished the antibiotic for my infection and that seems to be cleared up. My cough continues unchanged despite all the meds I'm taking. We'll have to see if there are any other options when we see the pulmonologist later this month.

Today I have a very upset stomach. Can't think of any reason why, since the chemo doesn't cause nausea. Maybe I picked up a bug. This certainly won't help me gain weight!

It's another beautiful day, but the rain is on its way. I hope to get out even for a few minutes to enjoy the sun and warm weather at lunchtime. Hope you are having good weather wherever you are.

Note: I wanted to clarify that the metastases in my lungs are leiomyosarcoma cells that took up residence there. (This also holds true for the metastases in my skull and pelvic bone.) I do not have lung cancer. I have cancer in my lungs, and that cancer is LMS. While it is possible for a cancer patient to develop another type of cancer, the metastases are always the same type as the original cancer. They are just growing in a different place. For example, if a man has prostate cancer and it metastasized to his liver, the cells would still be those of prostate cancer even though the tumors are now in his liver. It is not liver cancer.

Passed but barely

While most of my metastases are stable, the radiologist believes that there is one new lung nodule and two that have grown slightly. Dr. K believes that it is a possibility that the "new" nodule was missed on a previous scan and the measurement of the other two could be different because of a different view. She asked if I were comfortable doing another round and I said that I was. I would rather see a few comparative scans before believing that anything grew. So, today I start the third cycle and I'll be scanned again in six weeks.

It seems that this combination of drugs will provide me stability, but likely not reduction in the size of my mets. We'll see what happens after the next six weeks. I guess I need to speak more firmly to the evildoers.

Let's keep up the positive thoughts and not let this get us down. I'm not through fighting yet.

Scans completed

I had my CT scans this morning and everything went well. Now that I'm having them done at MSKCC, they access my port so there is no more worrying about getting poked in the back of my hand or wrist with a needle. If they didn't have to keep the temperature so cool because of the equipment, I wouldn't have a problem, but my veins seem to disappear when I get to the imaging center and have to put on one of those flimsy gowns. I'll get the results from Dr. K tomorrow. I'm still keeping all my body parts crossed for good results.

The weekend was quiet. I had my Zometa infusion on Friday and after all the rushing around after vacation, plus two chemo treatments in five days, I was very tired. I got my bills paid and my financial paperwork in order, but still haven't started our taxes. I guess that's next weekend's chore. I got my hair cut, because the big poofy curls were making me nuts and I felt every time I looked in the mirror that I didn't recognize myself. So far, the reaction has been good, although a few people seemed less than excited about the change. I'll have to post an updated photo one of these days. Otherwise, I relaxed and even sat out in the sun for a while on Sunday, soaking up the rays and getting some vitamin D.

I was incorrect when I stated last week that I'm seeing the radiation oncologist at the end of this month. We moved it to May.

Nothing else new to report. I'll be back with the results of my scans.

Second cycle completed

It's hard to believe, but I've finished the last treatment of my second cycle. On Monday, I will have my CT scans, and on Tuesday we'll find out how many more of the evil doers have bitten the dust. That will be followed by the first treatment of the third cycle. After six weeks, I'll be scanned again.

Treatment on Tuesday was fine, although the wait was too long again. We arrived at 7:45 and didn't get into the chemo suite until almost 11:30. No matter what we do to try to speed up the process, something gets screwed up almost every time. Once we waited two hours, but every other time it has been 2-1/2 to 3-1/2 hours. What a total waste of time. If this keeps up, I'll likely start coming back to the office after my meeting with the nurse or Dr. K and let them call me when my meds are ready. Sitting in the waiting area is booooring.

Other than continuing to cough, being tired as I try to get back into the swing of coming into the office daily, and fighting a vaginal infection, I'm feeling pretty good. My Zometa treatment was cancelled last week due to snow, so I'll be going to the NJ facility for that on Friday. Later this month, I'll have my 6-month brain MRI and see the radiation oncologist. I also have a follow-up appointment with my pulmonologist later this month. We'll discuss how the various medications are working on the cough (not so much) and see if there are any options left.

There is no snow in the seven day forecast. Hard to believe after all the storms we have experienced this season. Spring is right around the corner, but I wouldn't put it past Mother Nature to have another one up her sleeve. Even though I really like snow, I'll be very happy to see the flowers this Spring!

I'm back

Sorry for the long silent period. We took a little vacation and as soon as we returned, I had chemo. It was not a great transition from restful to craziness, but it had to be done.

The chemo continues to go well, and next Monday I have my scans. I still feel that this treatment is working, and the extra bonus is that I can go at least a week without shaving my legs. Ladies, you know how wonderful that is!

My Zometa infusion that was scheduled for last Friday was postponed due to the snowstorm -- our third big one of the season. I was rescheduled for this Friday, and thank goodness no new storms are on the horizon.

Nothing else new to report. I hope that the sky is sunny in your part of the world.