Friends, I'm going to be straight with you. These last 2 months have been the hardest for me since my entire time in treatment. Especially the last 2-3 weeks.I'll give you some highlights. Lumpy is finished being radiated but it still oozes and pusses out every day. They said it might take a few more months to heal completely. What on earth? It hurts and I have a huge bandage across my chest daily. It is uncomfortable and hard to sleep. Boy, how I hate Lumpy. I just want to wear v-necks again without having a 3rd boob. Is that so wrong?
The pain coming out of my neck and down my arm has been somewhat manageable with the help of oxycontin once every 12 hours. The doctor says I'll have to manage with pain meds forever because my only other option is surgery. I say nay nay! Last year at this time when the temperature turned a bit colder I had that awful pain in my right hip and couldn't walk for several weeks, in some old country store weather prediction kind of system. That totally went away and hasn't been back, so you never know. This arm pain is also coinciding with the cold weather. I asked my energy medicine person who recommended a physical therapist. After getting a script from my doctor and several calls to their office (also part of ORMC) I am scheduled to see them at 10 AM tomorrow. Perhaps I can get some exercises that will help with the pain. I am not allowed to do any adjustments or see a chiropractor, by order of my doctor and my husband who is very vehement against chiropractors. Fine with me. I just need some help. Between Lumpy and my whole right side, my sleeping options are narrowed to only one position.
So I've been sleeping on my back, but after awhile the sacrum area gets sore and I need to twist a little in the night to offer some relief. The side effects from my spine radiation have been a burnt esophagus and truckloads and truckloads of phlegm after the radiation beamed on the area of my lungs that produces phlegm. For 2 weeks now I have taken the better part of each morning, throwing up huge bubbles, and dare I say it to gross you out, thick strings of phlegm. It is choking and disgusting and completely exhausting. Sleeping on my back makes the phlegm pool in my throat so that when I wake up and stand up to start my day, the real fun in the bathroom begins. I guess I can say that at least my stepson will grow up pretty used to disgusting things and not wussy about it. I am mortified, of course, every time I know he hears me.
Before PhlegmFest 2010, I already wasn't eating and keeping food down at all. The gobs of phlegm serve as barriers to sending food down and the burnt throat make it really hard to swallow, prolonging the problem eating. I've lost more weight and nobody is happy about that. So they gave me this stuff called "magic mouthwash." Magic for who exactly? It is a pink combination of lidocaine (the numbing stuff you get at the dentist), benadryl, and maalox. You swish it in your mouth and then you swallow it. It's nasty, but it numbs your tongue and throat so you are able to take your pills and eat. The last few days I have been eating better, a few bites here and there and able to keep things down. I've even been able to take my pills without too many problems. The good news is that I do seem to get better, with less phlegm, every day.
It's been really hard because all of these things happen at once which makes them seem completely insurmountable. Is that the word I want? I know I can do it and that God is with me and I have an amazing support team and I just have to shoulder on. But damn, I need a fucking break. How much more suffering do I need to overcome to show everyone what God wants me to show them? I am a walking miracle and I am grateful for every moment that I am given and I talk about it with anyone who will listen. Apparently when I recap from the beginning, I've gone through a lot more then most. I'm not sure why but I'm here and I'll keep being thankful for all of life's wonderful gifts. This suffering makes those gifts shine pretty brightly and it does make me want to scream when I see people missing something so wonderful that is right in front of them.
Thanksgiving was small and very nice. Mom and I spent the night at John's house and then Richard joined us later. After about a half hour of phlegmmy fun, we watched the Macy's parade and had a lovely dinner. I was able to have a few bites of turkey that day and some mashed potatoes. My friend, Jennie, came to visit me from New York. She came in on Friday and left on Monday morning. I was worried that I felt so bad and wouldn't be able to do anything fun but she was OK with sitting on the couch all day with me. She is an amazing friend (and thankfully has a nurse for a mom so she wasn't grossed out). It was a tremendous pick me up and turned out to be lots of quality time together. I really needed that.
Oh, I almost forgot to tell you a story of incompetence. What fun! The week before Thanksgiving, I had my 3rd allergic reaction to Carboplatin so they are officially taking me off of that chemotherapy. The 1st two reactions weren't textbook so they weren't sure, but by the 3rd time I was vomiting and covered in hives so it's got to go, even though it was working pretty damn well. That Wed. my hemoglobin was low so they took the type/cross and set me up to get a blood transfusion the next day.
Thursday I got a call that there were no beds available at MD Anderson or ORMC but that I could go to Lucerne (2 blocks away, part of ORMC) and get blood in the inpatient area. Since it's part of the same hospital system, I thought all would be well. Hardy har har.
We arrived after my spine radiation about 1:00pm. The visit started off delightfully because the gift shop was having a $5 fabulous jewelry sale and we bought a couple Christmas presents. Fun! The administrator went through the paperwork and officially admitted me and then walked us out through a ridiculous maze that we never would have found our way through without him. He brought us to my room which had a little towel swan waiting for me like on the cruise ship. Cute. Cute. Cute. Then he left.
Apparently he didn't tell the nurses I was in the room. I had a gut feeling about it and after about 15 min. John went out and got our nurse who confirmed she had no idea I was there. My nurse during the day was named Vida and I found out later she was the charge nurse. You see what I did there? That sentence had two key pieces of information for you. That Vida is supposed to be the best nurse on the floor at the time and that we were there for a lot longer than need be-the day shift and night shift. We arrived around 1:00 PM and didn't get out until around 11:00 PM. Shameful.
I forgot to put the numbing cream on my port and they did not use the numbing spray, but she did call the pharmacy and order the spray for me which came as a prescription and now I own a bottle of useless numbing spray I will never use. She sprayed me but then didn't access the port right away, going through all of the medicines I am on and medical questions. When she got around to accessing my port (later I found out you have to access within 15 seconds of the spray) it was the most intense pain I have ever felt. She pushed the needle in slowly like she was doing fancy embroidery or something. When I winced and said "just stick it in quickly" she pulled back, said sorry, and pushed it in even slower. I've never had a nurse be so tentative with the port. Perhaps she needs more training as a port nurse, but remember, she was the charge nurse. Can you believe it?
The technician working with Vida was awesome. She ordered me some chicken fingers and fries from the cafeteria and who knew you could get such a thing. Now, admittedly, I was not feeling 100% myself. I had just been told the chemo that was working on the cancer was being taken away from me and needing a blood transfusion made me completely exhausted-not working on all gaskets. The poor woman came to deliver a boxed lunch to me and I kind of freaked out. I started crying since those boxed lunches make me so sick over at MDA. Apparently it was just to tide me over until the chicken fingers came later. When the same woman brought them later, I must have apologized a million times. They must have thought I was completely unstable. But I assure you, as a patient, I am very aware of how things should go down.
More time past and I was waiting for the blood to show up. Vida came in with some tubes and said it was time to do the type & cross. I said, no, we did it yesterday. She said they don't have it and it's not in the computer. I started crying because that was going to add all kinds of time to my transfusion day. Vida says it won't add that much time. I said, no, someone has the type & cross. She called the Lucerne blood bank and they didn't have it and I overheard her say, "the patient won't let me do the type & cross." I said, "wait, don't be ridiculous, of course you'll do it if you can't find it but someone has it. We did it yesterday specifically for this purpose." And then do you know that Vida had the nerve to tell me that they didn't do the type and cross on me yesterday. They just took blood to check my hemoglobin. Really? I went blow by blow retelling the blood taking, chemo, type & cross process and she still said I was wrong. Fascinating. Richard called Frenchy in Dr. Shah's office to complain.
Frenchy was pissed and knew we did the type & cross the day before. She called me directly and said they were wrong, they had the type & cross and the blood was on it's way to me at Lucerne. Since it only had 2 blocks to go, it should be there any minute. About 45 minutes later, Vida came in and said "your blood's here, but I had to eat." Then she disappeared for about 20 more minutes before bringing the 1st blood bag in. I guess no other nurse could have been asked to help me while she ate. Hey, as long as you eat, who cares about the patients?
I asked if I was getting Benadryl with the blood transfusion and she said no and that she never heard of someone getting benadryl with a transfusion. She said there was no order for it in the computer. I know, and have since confirmed, benadryl is always given with blood transfusions, just in case of an allergic reaction. It's given in the IV and acts very quickly to stop whatever adverse reaction is happening. So Vida says no benadryl, no benadryl. About halfway through the bag, I noticed I was starting to get a few itchy hives on my arms. I called Vida in to tell her I was having a reaction and probably needed the benadryl. She said she would call the doctor on call and be back. She left me, a patient having an allergic reaction, alone for 45 minutes! Then she walked back in with a benadryl pill my husband could have walked to Walgreens and gotten faster and said that's what the doctor on call ordered. I said "it's a good thing my throat didn't close up while you were gone" and she said "don't say that."
It was getting closer to 7:00 PM and she said the 2nd shift would be giving me the 2nd bag of blood. I have no idea why. So we sat there and 7:00 came and went. Around 7:45 PM we heard some movement out in the hall that seemed like a shift change. At that point I had been waiting for the 2nd bag of blood for an hour and a half. Richard went to the door to complain and ask what was happening. He heard the nurses talking and saying that I didn't even have a discharge order in the computer and wouldn't be allowed to leave after my transfusion. Wow, it's not in the computer so we can't do it. I'm sorry, Mrs. Goldstein. Going to the bathroom is not in the computer so we can't let you do that either.
Richard asked if we could get the 2nd bag of blood and told them we had been waiting a long time. Our new nurse, Idia, (also the charge nurse) said they were getting the report and we'd just have to wait. Richard said we've been waiting an hour and a half and we need some damn help over here. Idia got all flustered and told him not to be disrespectful to her and that she wasn't going to deal with him talking to her like that. I said, wait a second. He didn't cuss at you, he cussed at the situation. And you're offended by the word damn? Are you kidding me? He didn't call you any names. She left the room.
The new tech came in and was also awesome. The techs totally rock. We told her what was happening and she said she'd just go get that 2nd bag of blood for us. Idia came back in still flustered and mad and talking to us. I told Idia let's talk this out so everyone can feel ok. I don't think my husband cussed at you and we have been waiting a long time and are pretty frustrated. I'm sure you know how to deal with upset patients. We heard her on the phone getting the discharge order from the on-call doctor and by the time she came back in our room, her demeanor had completely changed from shitty nurse to really nice nurse. She even admitted to us that Vida said she could have started the 2nd bag of blood for us. Hmmmm?
Eventually I got the 2nd bag of blood. Idia ended up wheeling us out in a wheelchair around 11:oo PM. She apologized a lot and was super nice. We had already done some major shuffling for my mom to pick up Jake and whatnot and I was completely exhausted. As much energy as I need and get from the blood transfusion, I'm not sure ever going back to Lucerne will be worth it. All of that happening with the other side effects at once. Boy oh boy, I didn't need that.
Today I am starting a new to me chemotherapy called Abraxane. I most definitely will lose my hair but other than that it should be tolerable. It is every other week and not every week so as to give me a little bitty break from coming to the hospital all the time. It is in the taxatere family which is the same as Taxol, the very 1st chemo I ever got. That worked pretty well for about 6 months. Hope this one is tolerable and lasts longer. Put me in remission please? I want N.E.D. No Evidence of Disease!
Hannukah starts tonight and lasts 8 crazy nights, as Adam Sandler says. It is so exciting to see Jake with the candles and presents every night. Afterward, I'm definitely putting the tree up this year if I can get friends to come over and help me, which should be no problem. We need a little Christmas, right this very minute.
I'm still here. I'm still fighting. Hoping that 2011 will bring the miracle of total healing. For now, I'll continue to fight like I'm the Whack-A-Mole game. The cancer pops up in one part of the body and we smack it. Then it pops up in another part of the body and we smack it again! That mallot sure does hurt, but I'm in it to win it. :-)
Love you all!
Laura
