Friday, February 25, 2011

Ducks! Get in a Row!!

Tonight I will be honorary Duckmaster at The Peabody Hotel on International Drive. That is where the Young Survival Coalition Conference for young women is taking place. Lots of planets have lined up with other fabulous people helping me and strings being pulled and then all of a sudden, they said I was named tonight's Duckmaster. Hilarious. I can't remember what happens since I haven't seen the ducks since I was a real little kid. It's a big tourist attraction and the ducks come down from the roof, I think, onto the elevator, then into the fountain in the lobby. Well, I'll tell you after tonight-ha ha.

The CT scan came back normal for my bladder and kidneys, but the urologist still wants to do the procedure where a camera is placed up my pee hole and look around, just to be safe. I'm going through so much right now that I don't want to do it. Everything has been completely resolved. I have no more blood in my urine or pain when I pee, anything. Dr. Shah says it's up to me but hold the date just in case (Mar. 28). I really do not want to do another procedure. This might be the 1st major thing they've recommended that I refuse to do or at least opt to do later if the symptoms come back.

Here's the thing...

There's a new brain tum0r that has popped up. It is only 3mm and we are going to do my 4th stereotactic radiation procedure. They no longer bolt the halo onto your head so that is good news. Bad news is I have to wear a mesh mask completely around my head and am claustrophobic. I go Monday to get fitted for the mask and meet with the social worker so I don't freak out--all while on anti-anxiety pills. Quite the adventure. I'm more worried about wearing the mask then the actual procedure at this point. What a silly, stupid girl I am. Simulation/fitting on Monday, brain radiation is Monday, March 7. Please pray for peace and no mistakes.

Meanwhile, back at the ranch, holey is not healing fast enough. I met a surgeon that says it looks good but it's moving very slow. Yeah, duh. Dr. Longevine is my new surgeon and he's new to MDA and is very nice. He offered two solutions. The first is a very invasive reconstruction surgery where they take a muscle from another part of my body and put that healthy tissue in the hole and reconstruct the chest. This is not a good option for me because I would be off of chemo for at least 3 months from wash out time to recovery. Nix that.

The second option is to send me over to Florida Hospital South's wound care center. They have a hyperbaric oxygen chamber and MDA does not. This would speed up healing immensely by over oxygenating the tissues. It will be 30-40 days for 2 hours a day. That part is very daunting. Then I mistakenly looked at pics of chambers on the internet and am again freaked out for claustrophobia. Even if I'm in a big room with others, I will have to wear a mask all around my head for the 2 hours. What is it with these masks, dammit? I've been crying uncontrollably until my head kicks in and tells my heart to shut up until you at least see the damn thing.

We will go tour the facility and meet the doctors and look at the chambers next Thursday, March 3rd so hopefully I'll feel better after that. I mean, Michael Jackson, and lots of people pay lots of money for this shit. I've had some good advice on email and facebook from others about how good I will feel so I'm trying to focus on that. I'll tell you all about it later, I'm sure.

Yesterday, I had another blood transfusion. Even though I was off of chemo for a month, my hemoglobin dropped to 8.6. Ain't that a bitch?

So, I still can't get a break. But everything new that pops up it seems that God has equipped me for the fight. I can only imagine that going through all these different procedures makes me a better witness for others and helpful to those that might be scared after I conquer my own fears. Yeah, let's go with that.

Love to you all!


Saturday, February 12, 2011

Now, what about my hat?

Hello Friends of Cancercopia,

I am on Vicodin as I write this, forgive me if I go astray... I mean, as Christy writes this for me, since I am currently in the rabbit hole. The pain from the disk in my neck is back with a vengeance. It's the top of my shoulders, and it hurts so bad to just sit up or when I try to reach for something or to pick anything up, that I have gone to the "Big Dogs" for pain management.

Oxycodone was a disaster yesterday and will not be used again. Forget rabbit hole, I was somehwere in the belly of the beast and could not get out for hours on end. Today was Vicodin... which was better, but still loopy. Tomorrow will be Oxycontin. I am just experimenting to try to figure out which one makes me function the most during the day.

I had a CT Scan for the urine in my blood, and will get the results later this week. I couldn't lift my arms in the machine, so they worked around it. I love all the techs and staff that I have met and developed relationships with through this pathetic bullshit. I am blessed that they are so knowledgeable and compassionate at the same time. (as I type this, Laura is saying "it's not funny, it's not funny... stupid vicodin") :)

I got the creeping crud that has been going around which everybody gets, only mine includes vomiting first and then develops into a flu like creature. I had to go to an extra doctor appt so I could get antibiotics, cause you KNOW how much I love going to the doctor more than I need to.

I went to a Bridal shower today, and I looked really cute. For a cancer patient. That's what I aspire to now. To be cute... for a cancer patient. I even matched my hat to my shirt... my hand knitted donated hat. Sometimes the people who know me look at me with worry in their eyes- don't they know how much time I spent coordinating my hat and my shirt? I wanted them to tell me how cute it was. But they just took me to the nearest chair and plopped me down and threw a blanket over me and asked me what I needed all day. It was a really nice shower.

Now, what about my hat?

I got these cute knitted caps from a friend of mine who contacted a charity. Apparently there are charities where people just knit caps for chemotherapy patients. There's this one that they sent me that is a sleeping cap that I wish I could crawl my whole body in, it's so soft and delicious. The other two have cute flowers on them, which normally isn't my style, but they are damn cute. So maybe cancer is giving me a new style. As you can see from the pages in this blog, cancer is the gift that keeps giving to me.

My new style consists of (not that I ever had any damn style before) the jeans that aren't too big from losing all the weight. I mostly pick the ones that are one or two sizes bigger. I don't know what to do with the ones that are much bigger than that. I mean, it's not like dieting where you put the fat clothes at the back of the closet, or is it? If I get rid of the bigger sizes, am I being pessimistic that I won't be normal again? That my body won't be a normal weight again? It also consists of shirts that don't look too big and try to conceal holey. I try to hide holey from the world. The world is not ready for holey.

Sometimes I accessorize. But, now that's just too much trouble. If I can match the hat I feel pretty good about myself. All this usually takes about 7 hours to do, before I finish off with a nice pair of sneakers that don't hurt my feet. I don't think I will be setting any trends for anybody soon.

Love you all!!

Monday, January 31, 2011

Proceed with Caution

Many times I have told others that my blog is rated PG-13. Now is one of those times. I'm going to talk about things going on with my body that might be gross. Consider yourself warned.

So I've been getting nosebleeds since I've been on Avastin which has been several months now, maybe even a year or so. This really sucks. I actually have a nosebleed right now all crammed with tissue while I type this. Avastin was in the news as the company that makes it has not proven overall survival rate in metastatic breast cancer survivors so the FDA will be removing its approval. If this happens, hospitals won't administer the drug and insurance companies won't pay for it. This is disturbing because my doctors and I believe it is part of the treatment keeping tumors out of my brain. They have been going ahead and giving it to me for now, until someone tells them differently.

Nosebleeds all day long really suck. So then I wonder why in the hell am I on this shit if it's not helping and I want to get off.

Avastin also delays wound healing so we actually just skipped a dose while the holey heals. The holey will probably take several months to heal so I think we should take a break from Avastin for awhile. The doctor's office wants me to call every time I'm about to have chemo to discuss. What a drag. I'll do it though.

Avastin also causes blood in the urine. I had a large amount of blood in my urine sample a few weeks ago and the doctors have run two urine cultures since and both came back negative so the doctor's office told me not to worry, it's just a side effect of Avastin. But this weekend, it got worse. Every time I peed the toilet was dark, deep red. I am totally freaked out. I don't have any pain though, so it's confusing. I'm feeling more run down then usual, so it could be some sort of infection, who knows. They took another sample today, are growing another culture and referred me to a urologist. Lucky urologist only works on Fridays so I have to wait until Friday all freaked out. Or beyond that for whatever tests they want to do and wait all freaked out for that.

And now there is random shit popping up. My chest hurts so much from the holey that I can feel the pain shooting up my nerves into my neck. And my neck and shoulders are hurting again but I'm not going back to that horrible physical therapist. And my lower back hurts. And today I was doubled over in pain from constipation, but don't worry, that only lasts for about a day then all the poop pushes itself out in very painful and bloody bowel movements. Fun, huh? This is my pattern, get diarrhea, take pills and be constipated for a few days until my insides feel like they are literally bursting out through pile of razor blades in my ass.

Also, now my front tooth is discolored. All of sudden. Brown tooth! From the meds. Doctors don't care, it's just part of the "cancer journey." Well, fuck it all, I am so sick of this bullshit.

I'm just telling it like it really is so you'll know the real answer to "how are you feeling?" It's just too gross to tell you the truth in person. This is truly how I'm doing. Navigating these bullshit side effects and pain every day. But I will not let cancer win or get the best of me. I'm fighting this at every turn with energy medicine healing sessions and good times with family and friends in between the crap. There is no way it can win! Thank you for the support that helps me believe that every day!

Thursday, January 27, 2011

Holey piece of shit, Batman!

Holey has taken over the spotlight in my cancer fight for now. About a week ago, the nurses of wound care suctioned it out with a vaccuum. Yummy yum yum. Holey has been very angry since. They say it is healing well and that I am doing well, but my chest feels like someone is stabbing me. Yes, I have pain meds. No, I don't like to take them. I am already on so many meds and Advil does seem to take the edge off a bit, so it's fine. For now.

The nurses say I will do the suction thing several more times. They are trying to move the inside of the hole from a yellow, pussey place to a bloody, beefy place (direct quote from the nurse). It needs to be more vascular and guess what that means kids. Vascular = painful! But hey, that's all part of the healing process. We bloody the shit up and then it can scab over and heal. It cannot happen fast enough for me. That fucking lumpy has taunted me for several months now and now he taunts me from the great beyond. Piece of shit lump. Bullshit.

That's right, the bullshit train is still running on the tracks with no scheduled stops. I frequently think about how I can get off this ride and still be alive and well. Can I ask the doctor to take a few months off of chemo to try to get my body back? I need strength and I actually miss the girth I had which made this fight easier. Maybe I should go on tour talking to girls about their weight. Don't worry, ladies, you may get a form of advanced cancer and then you'll wish you had that fat ass, believe me. Well, I'm not sure many people would show up for that tour, even if I'd be sure to serve all the doughnuts and pie you could eat. Mmmmm....

I had a PT scan but it was considered a baseline PT scan since the last one I had was in 2007. I've gotten CT scans this whole time and why the doctor now wants to switch to PT scans, I just don't know. So, we can't really check in on how the cancer is going away until the next scan in 3 months or so. Hey, don't ask me. I just show up where they tell me at this point.

I'm trying to stay warm with the Florida cold snaps. Brrrr... you people with your snow think you have problems. Try 65 degrees! It sucks! Hahahahahahahaha!!! I am so glad I live in Florida. I imagine trying to go to treatment with all that snow and crap--no thank you!

I'm resting a lot now that I've taken the break from work. I have no idea how I was working and doing treatment. Resting really has become my full-time job. Transitioning back to work will be interesting after the break, but I'm not thinking about that. Now I'm just worried about how much I'm eating and when to take my next nap. Ahhhhhhhhh......

Love to you all!

Friday, January 14, 2011

Holey Holey Holey!!!

I've been feeling much better and although I don't eat much at meals, I have been eating better and keeping food down. I saw the doctor two days ago and she said I looked stronger than she has seen me in a long time. So things are moving right along.

I am grateful for all that radiation to be finished and now I am back to a somewhat "normal" chemo routine of chemo every other Wednesday. I really enjoy the weeks off from going to the hospital, let me tell you.

Being off of work is very strange. I miss the people in the office terribly but my body feels completely stress free with not thinking of what needs to be done in the office. I can take several naps a day if I want and I have been doing so happily. It feels like that part in Forrest Gump when Jenny comes home and sleeps and sleeps for days. I didn't realize how much sleep and rest I wasn't getting before now. Yoda dog is over the moon because I'm home all the time and naps around with me. He looks so betrayed if I leave to go anywhere, like his face is saying, "hey, I thought we were in this together. Where do you think you're going?" I know I made the right decision to take a break from work. Sometimes I'm bored, but I have plenty to do around the house. Heck, I haven't even taken down the Christmas tree yet. :-) It's like I'm waiting to make sure I will have something to do or some weird thing like that.

Two more ladies passed away from our stage IV support group and one more is having all kinds of scary problems with her liver right now. There are 3 of us left from the original group-her, me and Marcia. We're freaked out but we call each other and support each other as much as we can. It is totally bizarre in a way I really can't explain. You don't want to waste your somewhat "healthy" days on worrying if the things that are happening to them are going to happen to you. Every day is God's gift and it's important not to squander them or feel guilty because those horrible things aren't happening to you. There is a reason for everything and I feel so blessed to be doing better and to have known these women. I'm so grateful that they came into my life at all. Cancer did that.

So, I wish that were all I had to report. Today I checked in at the wound care clinic. They have been monitoring lumpy on my chest for a few months now. I have watched lumpy miraculously dissolve and go completely flat. But there has been a nickel size pus scab in the center of where lumpy was located for weeks which we've been keeping covered and putting medicine on. Well, today, the nurses took the pus scab off the top. Then they squeezed the circle and oozed all the pus out of the circle. They were very excited and encouraged that all the pus and crapola came out of the circle. Guess what remains in the circle? Nothing!!! It is a big gaping hole in my chest!

No, I'm not exaggerating people, which I know I tend to do. There is a hole in my chest that you could stick your thumb down into. It reminds me of the anti-smoking commercial that aired years ago of the old woman smoking a cigarette out of the perfect hole in her chest. I was completely freaked out when they showed me and started to cry. These nurses have gotten to know me very well over our time together and they just hugged me and said it wasn't so bad and that it was a really good sign. Then they gave me stuff to pack the wound so the inside could heal without the hole closing up. I was alone today and I'm supposed to show Richard how to do it without vomiting. So we'll see how that goes. I just have to remind myself it's a superficial wound and no organs are going to pop out and ooze out of the hole. Yum.

So that's my bizarro update for now. Love to you who still read these posts.

Muchos Smoochos!

Friday, December 24, 2010

Happy Everything to All!!

It's Christmas Eve, friends, and I am grateful to spend another Christmas with friends and family; and the chance to be grateful and thank all of you for your continued support.

The last few months and several weeks have been up and down. Every day is a cancer adventure and I don't mean adventure in a good way. Every time I put food in my mouth, I'm not sure if it will come back up or not. It's been quite the challenge to get ready for Christmas with all the shopping and running around when I only have energy to maybe visit one store a day and then have to come home and take a nap. But I did it! All is ready for Christmas, hooray!!! It took the help of my mom and my friend, Theresa, helping decorate our tree. It took a lot of help from Richard around the house to conserve my energy and do some of the running around. It took some help from free shipping offers on the internet, but it's true----you aren't helpless if you have cancer and feel like sitting on the couch all day, especially if you have an amazing support team like I do. I am so lucky.

I had a brain MRI and it came back negative--no new tumors. Yay for an empty brain! We will check in on the brain again in 2 months which is our schedule.

The scans that will show the rest of the body (CT, bone, echocardiogram) will be in February. The doctor wanted to put some distance between the radiation and the scans so there would be no false readings. The last CT said my lungs were clear. The last bone scan showed the spots on my spine and sternum that we just radiated, so those spots should be stable now. That leaves the pesky little liver, but the last CT showed that the cancer went down on my liver. Hopefully, it will have gone down even more and everything else is still stable.

My hair is slowly coming out in little handfuls on my pillow and in the shower but you can't really tell yet, unless you visit my shower where all the hair piles up like a nasty little chihuahua.

It has taken me almost 4 years of treatment to get this beaten down by the side effects and medicine so that might mean something like I'm a bit of a bad ass still. I hope. Having such a rough time has put some things in to perspective regarding taking of myself and my family vs. work, even if it's working from home. So, starting January 3rd, I am taking an official leave of absence/short term disability from work. My new job will be taking care of myself full-time. I hope that will leave more energy to give to my family.

I am a bit nervous about how I will spend my days, although if recent days are any indication, it will be lots of napping with my fuzzy snuggly dog, Yoda, and playing roulette to see what food might actually stay down. I am looking forward to the break, though, and just thinking about myself, which I never do. I've set up a weekly standing appointment with energy medicine/massage with the fabulous ladies at Massage Solutions on Corinne Drive. They really are amazing and have helped me tremendously.

I am also starting to look at yoga schedules to see if I can start that. Perhaps that will help my muscles relax and pull me into the right posture that I've been destroying my whole life with my hunching forward. Sanctuary!!!

I don't like the physical therapist I've been seeing so I won't be back to her after next week. She does trigger point therapy which basically means she squeezes the shit out my muscle until it releases. Quite frankly, I've had enough. I'm returning to the good old fashioned get in touch with your body and breathe technique. Let's see what the hippies know.

I hope you all have a fabulous Christmas. I am grateful for you and your support and the fact that you even bother reading my little ol' blog. I love love love you!


Wednesday, November 17, 2010

Hit Her Again!!

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!