Tuesday, February 24, 2009

Post-Chemo Update

Yesterday was Day 1 of Cycle 4, so in addition to chemo I saw my gyn/onc. She took out the stitches from the port removal and wants to get it totally healed before moving forward with a second port installation, which is fine by me. I think I will also take Scott's suggestion to use an Epsom Salt compress on the site, since it seems like there may be stuff in there that wants out. She felt that the progress was okay, and even though I was getting more pain from it the last couple days, the removal of the stitches seems to have calmed that down quite a bit. The doctor was upset that when they took out the port they didn't save what they removed to have cultured, so we could get this thing over with once and for all.

The really good news was that we discussed the visit to New York and the results of the CT scan in more depth, and we (Scott was with me) found out that the actual tumor in my pelvis has shrunk as well, not just the lung mets! It seems that the treatment is really doing the trick, and she even gave me the option of moving from three week cycles to four week cycles so I could get more strength back in between. I thought about it and decided that I would stick with three-week cycles as long as I can deal with the fatigue just to keep things moving at a faster pace. If I lose a week every month I can get behind and I would rather try to make it to the surgery in less time.

We also discussed Scott donating the blood for future transfusions and surgery (we could get two pints out of him pre-surgery), and it seems that we are a good match since he has O+ and I have B+. The Dr. was only worried about the blood out to the Rh factor level, so she will write a prescription for a donor-to-donor transfer the next time I need a transfusion. The only thing I worry about is that I may develop a conditional blindness to dirty clothes on the floor if I get too much of Scott's blood running through my veins!

Sunday, February 22, 2009

Weird Cravings (and the port)

When you get chemo you are advised to eat small meals several times a day and eat mild foods, to avoid becoming nauseous. Many people even get what is called anticipatory nausea before a chemo treatment starts since they will become nauseous during treatment. In this way I am also odd, apparently, as I have never gotten nauseous during chemo, and only once or twice in the days after treatment. When I feel a bit of nausea coming on I take one of my anti-emetics and feel better within 20 minutes. They work very well on me!

Instead of nausea I tend to have cravings for spicy foods, often during the actual treatments. I like all of these foods normally, but I usually do not sit around thinking of them, but during chemo all I can think of is spanakopita, spaghetti with feta cheese, jalapeno poppers, samosas or one of many Mexican food items. Fortunately we have found ways to meet these cravings without having to go in search of the food itself. Instead of spanakopita Scott makes spinach with a bit of feta cheese and some lemon juice, effectively satisfying the craving without loading up on calories, and the samosa craving can be satisfied by frozen Masala Burgers from Trader Joes. The best thing ever at Trader Joes (at least this week's best thing ever at TJs) is the soy Chorizo. It tastes just like the real thing without the meat (or whatever its made of, ick) but with all the flavor. Scott loves it too.

So, the site of the port is getting hit from all sides this week from a new antibiotic, moist heat treatments, regular doses of Motrin to help with the swelling and pain meds. It started looking better early on, but is now getting red again! I see the doc tomorrow, but it is the most frustrating thing about this experience so far. I just want it to get better so I can focus on the real issue. I'll give an update after we see the doc tomorrow (yay, Scott is off tomorrow so he can come to my appointment with me).

Sunday, February 15, 2009

The Ghost of the Port

So after my almost six hour delay in leaving New York Thursday night due to cancelled flights and high winds I got home and to bed by 1:30. I woke up on Friday to find the former site of the port acting up again, so I started taking the Augmentin (antibiotic) I had from two infections earlier. By Saturday it didn't seem to be doing the trick at all, in fact the site was more swollen, red and warm to the touch, so I once again called the emergency number (nothing bad happens except on the weekends, it seems).

The good news is that one of my original surgeons was the doctor on call, so she was more than familiar with my case. In fact she was the doctor who originally broke the news to Scott and me that I had cancer, so she remembered me well, even asking about the dogs. She was concerned by what I told her and wanted me to come to the ER so we could avoid a blood infection.

My dad is in town, so he took me to the hospital and another adventure began. It was pretty low key for us, but there was lots of stuff to observe. A couple different prisoners were brought in, guards with guns, the whole show, and it made me wonder what the guards do when the prisoner is being X-Rayed. They are practically glued to them in the exam area, so do they stay in the room during the radiation, or do they leave them next to an unlocked door to stand behind the glass? Just curious, but I digress.

The cadre of doctors decided I have thrombophlebitis, basically a non-life threatening and rare (surprise!) clotting around a particular area in the vein in my neck coupled with an infection. I asked if there was any way to avoid being admitted, so they spoke to my gyn/onc at home (she is probably as sick of this port thing as I am) and decided to give me heparin which I must inject into my stomach area subcutaneously every 8 hours in addition to continuing with the antibiotic. Well, its better than sitting in the hospital just so someone else can do the shot, I suppose, although it's kind of icky. So, here I am, trying to get rid of the port infection once and for all that I've probably had since it was installed on 12/8/08.

The visit to the ER did give me a good idea for a story, though, so I may write it soon. Imagine the worst night ever in the ER....Friday the 13th, a full moon, a summer night where the temperature never dips below 100 degrees....

New York, New York

On Thursday I flew to New York for the day to get a second opinion at Memorial Sloan-Kettering Cancer Center from a sarcoma specialist. Sarcomas like mine are a rarer form of tumor, and there are fewer sarcoma centers and specialists in the U.S. than specialists in other types of cancer, so I thought it important to get the second opinion from a sarcoma specialist rather than another "regular" oncologist.

The trip was fun-filled, starting with a two hour delay on the runway in Richmond, awaiting word from La Guardia that the high winds had died down enough for us to land. I had planned on going to the metropolitan Museum of Art for a visit to the Temple of Dendur, my favorite place pretty much anywhere, but the delay effectively killed that idea, as I made it to MSKCC with about a half an hour to spare before my appointment time.

My appointment was with another woman oncologist (yay) who was actually recommended by my own gyn/onc. They had talked about my case at a dinner a few weeks earlier, so she had some familiarity with me, as well as her specialization, so I felt that I was in good hands. She was particularly encouraged (and encouraging) about the recent CT scan compared to my first one, and she thinks that the one area that got bigger may actually be some necrotic tissue thrown off by the baby tumor as opposed to growth of the tumor itself, which would be even better than the original interpretation. We can't know for sure, but I have to say I like her theory better!

She told me we were only at step one and I need to be prepared for a long journey, especially with the metastases, but feels that the cancer can be beaten. Her general opinion was that I need more chemo to keep moving forward with the good results we've achieved so far before we move to surgery, so after she and my Dr. speak I will most likely get the word to continue chemo, which I sort of felt would be the decision all along. I already have my next chemo cycle scheduled to start on 2/23 (next Monday).

Wednesday, February 11, 2009

Bye, Bye, Portie

So I have been feeling horrible the last couple of days, and also developed some symptoms that ended up being side effects of the sulfa drug Bactrim that I was on to help heal up the infection in my port catheter. My hands have a dark purple rash that makes it look like I have gloves on, and I have basically an Egyptian-stlye collar's worth of rash around my whole neck and shoulders. The dots also go onto my face and I started getting sores around my mouth. Well, after a friend at work suggested I look at the side effects for sulfa drugs (she has a sensitivity to them as well) it ended up these are all related to the drug I was taking, not any backlash from chemo, which I was thinking it was. To top things off, even while still on the drug to cure the port infection, the port started heating up, turning red and showing signs of infection again this morning!

It got worse all day, but this time I acted faster than before and called my doc early on. Long story short, she took me off the medication effective immediately and made an appointment to have the port removed today before it could get any worse. After three previous infections she (and I) had had it with the port. So, it's gone! I went to the hospital and had a quick outpatient procedure this afternoon, and am now port-free! I may need to get another one put in on the other side at some point, depending on when/if I get get chemo again, though.

I also heard briefly about the CT scan, although I will get the "official" decision after I have been to Sloan-Kettering and the two oncologists discuss things. It looks like treatment is working, and most of the mets in the lungs have shrunk, with the exception of one spot, which has grown. The good news is almost everything is responding to treatment, so based on what Dr B and tumor board discussed this morning along with the second opinion input after tomorrow, I will either be having surgery soon or a bit more chemo then surgery. Hopefully I will get definitive word before the three day weekend, so I don't have to wait too long. I personally am concerned about the spot that has grown, burt I will focus healing energy there and see if we can't send it along with its friends. All in all we have a very good outcome after three cycles of chemo, and I am fine with whatever course we take next as long as I hear about it soon! I get impatient and stressed waiting for results, since its hard to know the answers are out there, we just don't know them yet.

Monday, February 9, 2009

Slipping Further Behind

It seems that every day I have more to do and less energy to do it! I was sick again this weekend, it seems that the pattern is pretty set, and no matter what I do I have a couple of absolute no-energy days around Day 12-14 of my chemo cycle. I will have to plan a bit better for this, since the last couple times I've thought I was going to escape and keep good energy but find at the last minute that I'm down for the count.

I need to beg everyone's indulgence since I am woefully behind on e-mail and phone messages, and hope that you will all bear with me while I take the time to get back to everyone. I so appreciate the well wishes and good thoughts, and every message and e-mail makes me feel better and lifts my spirits, but it will take me awhile to get caught up with everyone!

I have broken out in the secondary pink spots again, this time at the back of my neck, and think they are from sweating (lovely, eh?) when I am not feeling well and in bed for a bit. They act a bit like acne or a heat rash, and that's all I can figure out, and last time disappeared pretty quickly, so I'll just keep an eye on them this time and see if a pattern develops.

The very good news is the books are almost gone from my house forever, and that will free me up to get much more done without that chore hanging over my head. As I said I'm glad I had the contest to distract me, but the packaging of the books was a huge task that I will not miss once the Post Office has taken the next step for me! It took more energy than I anticipated, but I had good help and can feel good about getting it done. No chemo this week, so my energy level should just keep going up, and I'm looking forward to NY...no CT info yet, will post as soon as I know.

Thursday, February 5, 2009

Love Can Heal

So while I was waiting for lab work a week or so ago I watched as on old woman stood next to her husband's wheelchair. There were plenty of chairs around, and in fact a gentleman asked her if she would like to sit, but she refused. She stood next to her husband, hunched over in his chair, and slowly rubbed her hand up and down on his back for the entire time we waited, probably half an hour. You could tell that it was something she did to make him feel better, probably on a regular basis, as it was a practiced motion yet utterly without thought on her part. She would lean over from time to time to talk to him, and he appeared to be quite shrunken and not in great shape. I think the reason he is still alive is her love for him and his for her. She is his rock, and it nearly made me cry (okay, I admit I leaked a few tears).

Sometimes at night when I have a bad time of it, all of a sudden I feel Scott's hand on my shoulder, or he'll whisper how much he loves me or "We'll get through this". I don't know how he even knows I'm awake, but he is always there for me, even if it seems like he's still asleep. I'm quiet as a mouse, but he must feel it, or something. Knowing he's there makes all the difference, and keeps me going.

Transfusion Day

Well, as with everything else so far, the transfusion went fine, so it seems that my body is handling all sorts of weird stuff very well. I had barely any change in temperature or blood pressure the whole time (and they monitor it closely). My friend dropped by the Cancer Center to visit for a couple hours too, so it was nice to pass the time in conversation rather than just nodding off or reading magazines. Because they gave me benadryl in case of any allergic reaction I was (and still am) tired afterwards, but I trust that my new pint of blood will kick in tomorrow and leave me with lots of new energy and fresh iron!

I also had my CT scan this morning, but no results yet. I talked to my gyn/onc's nurse pratcitioner and she told me that I might not get my results until next Wednesday, since it takes 24-48 hours for radiology to read and interpret the results and that my gyn/onc wants to discuss the findings with Tumor Board, which occurs on Wednesdays! Very frustrating, so I think I'll call on Monday to try and get at least an idea of what is going on with the lung metastases just for peace of mind. I actually have a copy of the scan in my bag on CD for my trip to Memorial Sloan-Kettering (maybe I'll run into Ruth Bader Ginsberg up there, who knows?) but I don't have any software to read them.

A quick note on Gambit for those who are worried about him: He is acting like a puppy, has no arthritis, is engaging the other dogs in play and basically acts like a 2-year-old, so his cancer doesn't seem to be affecting him in any way. He seems to have more confidence since Neut has been gone, I think it's becuase he was getting tossled about on the stairway a bit and now can move around freely and is not worried about getting knocked down, but whatever it is he is doing great!

Monday, February 2, 2009

Gambit's Diagnosis

So we found out today that Gambit, our 12-year-old Doberman/Greyhound cross has a malignant fibro sarcoma, making him the second sarcoma patient in the house. He had surgery a week ago to remove a big growth, and the lab results came back, so we just have to keep an eye on him. The vet is not sure if he got the whole thing or if it will grow, and at his age and with a slow-growing tumor acccording to the vetthings could be just fine. I hope he has to get less treatment than I do!

I had chemo today and found out that the shot I've been getting every cycle to promote red blood cells has not been doing all it could, so I am scheduled for a blood transfusion on Thursday. This process takes 2-3 hours, they tell me, and I am already getting a CT scan that morning, so it looks like I have to miss another day of work. I ahte constantly missing time, but I don't really see what the alternative is, so I'm glad work is working with me so far!

After finding out about the transfusion it occurred to me that perhaps I'm a bit sicker than I feel/act/realize. I make this statement not for sympathy but because I guess I don't feel as sick as the terminology warrants - "transfusions" and Stage IV terminal cancer" don't feel like they apply to me, that's all. Those are things for REALLY sick people, right? I don't have pain from the cancer, just from the treatments sometimes, and am mostly tired - how can this be as bad as all that? Am I in denial? Can I just not be bothered with the doom and gloom? I want to be realistic but I just don't feel as bad as all of that. I see some pretty sick people when I go for treatments, and they are still fighting and moving forward, so it seems like a no-brainer that I would be doing at least as much or more than they can towards getting better, so how can we lose? Well, denial or not, still no plans to cave in anytime soon, so I guess you are stuck with my yammering for now!