Thursday, March 31, 2011

Day 4: I Feel Like I Have Been Run Over by a Truck!

More Blankets Please

Last night was the most miserable night thus far. The chemo continued to drip until midnight and once my nurse was through checking my vitals, I finally fell asleep. I've been running a temperature most of this evening and on into the night. The Tylenol and ice pack seem to keep it around 100 degrees. I guess at this point they are hoping that it is a reaction to all that my body has been through as opposed to an infection of some type.

Between the fever and the disease I fluctuate between being dripping wet with sweat and being freezing cold because I am dripping wet! The poor nurse had to change my sheets twice between 2:00 am and 4:30 am. Fortunately Joe had taken my previous “wet jammies” and washed them and brought them back, so I had dry clothes to put on. This type of “sweating” is about 1000% times worse than menopause! It’s odd how it only seems to show up during the night.

It seemed as though I had just closed my eyes when the breakfast tray arrived. I told her to put it on the table and close my door on the way out. I slept for several hours, right until Joe arrived for the day. Breakfast now really cold and nasty!

Round 3 of leukapheresis and chemo began much earlier today. Suzanne was there at 9:00 am. She had me hooked up to the machine in no time at all and since she was the gal that trained my previous blood suckers, she was finished in record time; 4 hours. My only complaint with her was that she would not leave me alone, even when sitting upon my “bed pan slipper”; that would be how I know about “stage fright!”  My starting blood count was 198,000 and with this treatment I was down to 134,000. Hopefully after the chemo, tomorrow morning’s count will be below 100,000 so this will be my last pheresis treatment. My fingers are crossed.

After the chemo finished dripping I totally felt as though I was comatose. I could not keep my eyes open for anything. I told Joe to check periodically to make sure I was still breathing. The fatigue was beyond any fatigue that I have ever felt. I was continuing to run a fever and my blood pressure was running so low that the nurse had to check it manually. No nurse’s aid with the fancy “all in one wireless” check your pulse, temperature and blood pressure on wheels could get an accurate reading. I am sure that was quite an imposition for the nurse that seemed quite annoyed with having to stop whatever it was that she was doing, just to check my vitals. She was actually the charge nurse, which I guess means that she has more time to FaceBook and I was interrupting her. Yes, as a patient I can see you on facebook as I lap the nurses’ station. Busted!

There were no laps today and no Netflix for me. I was in and out of consciousness all day with pity parties aplenty. When the doctor finally arrived around dinner time, he saw how wiped out I was and ordered blood. Finally at 11:10 pm they began to drip one unit of blood into my body. This took another hour to complete with many ins and outs from my nurse. I really have no recollection of them even drawing my blood in the middle of the night, they said I just flopped my arm open and never even moved. I am guessing that I slept straight through till morning. This was a really long, miserable, horrible day!

Monday, March 28, 2011

Day 3: Maybe I Really DO Have Leukemia

February 11, 2011 is the day that I began to realize that maybe I really did have leukemia. It was not a dream or a bad joke; it was real. Upon my first conscious thought of the morning I realized that I had tears streaming down my face. It was very early and still dark in my room; I was all alone with my own thoughts. It seems that my sub-conscious self was trying to tell my conscious self that this nightmare was real and I had better suck it up and get ready for the battle. This was the very first time that I really contemplated my fate, as well as my journey.

Of course this pity party did not last long as the parade of health care professionals began their day. Shift change is a very busy time. You had better hope that you do not need anything important during this turn over. I believe that they try and distract you with “breakfast.” I ordered oatmeal as I thought it might slip easily down into my rather funky stomach. Ha-ha joke was on me! It was so sticky that I could turn the bowl upside down and it would not even budge. Next: Scrambled eggs? Ba-boing! Bouncy little yellow things were on the plate. The potatoes weren’t too bad other than they were full of onions and peppers, two of my favorite foods that no longer smell or taste very good. Thanks chemo, and only one dose! The old standby will have to do; Graham crackers and Pepperidge Farm cookies.

My starting blood count for the day was just above 280,000. I was very pleased as the pheresis person had warned me that it might go up overnight. The only thing on my schedule for that day was leukapheresis and chemo.

After resting for a while I opened my eyes to a beautiful sight. My lovely daughter was standing at the foot of my bed. She said that she would’ve been there sooner but she had stopped to get some warm, soft, fuzzy things for me. One of the worst symptoms of leukemia is night sweats. First you get soaking wet and hot and then you begin to freeze. My daughter brought me a pair of polar fleece jammie bottoms with hearts and “I Love You’s” all over them and a Super-Girl top. She also brought a very soft jacket that I am still living in. The knee socks were a kick, with hearts and kisses; it took me a moment or two to realize that it is almost Valentine’s Day. Good thing that I had already bought cards! I quickly changed out of my damp jams and into the new, soft warm ones.

Since I was looking “SO Hot”, my daughter took me for a 15 minute hike around the nurses’ station. After 8 laps we went back to my room and climbed in my bed. Having her there to snuggle in the bed with me brought me such joy and inner peace. My daughter has suffered great loss in her life, her greatest love died in a car accident when she was only 17 and several other friends died a few months later. She knows and understands loss. She and I have always been very close and I am so dreadfully sorry that she must now face my cancer. I know that being here with me helped assure her that I was going to be just fine. She is still having a difficult time not being with me every day.

Within the hour Joe was also back at the hospital; I now felt safe and cared for and ready to face the day. Barry, the new leukapheresis nurse showed up about 2:30 in the afternoon. They were bound and determined to finish up my day much earlier today, than yesterday. I told him that he was lucky that this was day two because I had gotten most of my questions answered the day before. He said he didn’t mind answering questions at all and even explained the process in more detail than Nelson. He said that they also used this machine to harvest platelets and that it was a life saver for CML patients like me. I actually tolerated the procedure better today as he had notes from the previous day and made the necessary adjustments.

Of course, no sooner did he show up and get started, when my parade of visitors began. My youngest son and his Dad showed up, my sister and my dear friend Peggy. The machine itself took up the entire left hand side of the room and with LeeAnn and Joe already IN the room, it was a tight squeeze! My sister had the good sense to bring me new slippers. They were much more attractive than the garden clogs that I had been sporting on my jaunts around the nurses’ station. While I am sure that seeing me hooked up to this great big machine was a scary sight, I am also sure that seeing me awake, alert and able to laugh and joke through the procedure helped give all of us a sense of hope,  acceptance and security. I was able to explain to everyone a bit about the type of leukemia I had and how we were hoping to get my white blood cells down quickly with this machine. Dr. Han even poked his head into my room in the middle of all the confusion. He didn’t stay long!

We continued on with the leukapheresis for 4 ½ hours and my visitors began to trickle away. I can’t say that I blame them, who the heck wants to be at the hospital unless they have no other choice?  Only my daughter and Joe remained. My daughter came up with the brilliant idea of Netflix. We had never used Netflix before so Joe quickly signed us up and we were Live! I was so grateful that the he now had something to do for all of those hours and hours that he was parked in the chair next to my bed.

Dinner showed up just as they were wrapping up the leukapheresis party. Being that I was quite nauseous and Lee and or Joe had yet left the room, they shared my gourmet meal. Since LeeAnn was staying for a few more hours; Joe left the hospital and hopefully regained some of his own sanity. He has been by my side for three days and must be emotionally and physically drained. I insisted that my daughter not stay too late as she had a two hour drive home and convinced her to wait until I was home from the hospital before visiting again.

The nurse started my chemo dripping just as Joe returned. I was much more comfortable receiving my toxic potion today since I had already survived Round 1. We powered on Netflix and started watching “Californication”, a show that neither of us had seen. We figured that since the whole first season was on instant que, it would keep us entertained while we were stuck in the hospital. I must admit that it was a bit racy and there were scenes that definitely that made us turn down the volume!

I think that I probably dozed through most of tonight’s entertainment, but I did wake up long enough to get my blood results. The white cells were down to 198,000. We were very pleased and my doctor was very surprised. I was responding exceptionally well to the treatments and the chemo. He hinted that my 2 week stay may be shortened as long as I continued to progress at this rate. This was very exciting news and a great note on which to say our good-nights. Day 3 ended on a positive note.

Thursday, March 24, 2011

The End of Day 2: Let the Chemo Begin!

So here I am; it is almost 10 pm and they just finished up with the leukapheresis. We are both exhausted. There has been so much to digest and so much going on that I have barely even had time to think. I still know very little about leukemia and have yet been able to get my hands on a computer to start my own research. The nurse comes in with new consent forms. These forms are for the chemotherapy which is to begin shortly.

Of course I sign on the dotted line as I have been told that this is a necessary treatment towards my recovery. I begin to ask them questions regarding the type of chemo it is, what are the side effects and how long do they last. I also want to know what the goal is. Being that nausea and vomiting are part of the side effects I firmly inform that that I have, for lack of a better term, “vegul nerve syndrome”. This lovely syndrome occurs right before I vomit, throw-up or puke! Just prior to throwing up I get very light headed and pass out. Yes, I mean pass out cold! Never know just what position I will find myself upon regaining consciousness but I have experienced many black eyes and knots on my head from the enchanting phenomenon. I did not wish to reenact any of those scenes during my chemo treatment. I did not have near enough padding for their bathroom floor and I just couldn’t get over imagining the ba-zillions of germs lurking in that room.

With that being explained, they ensured me that they were going to do whatever they could to keep me from becoming nauseous. At 11 pm they started Aloxi, a medication that is a long acting anti-nausea drug that should last about a week. It took about 45 minutes for that med to drip into my IV. At this point Joe headed to a hotel right around the corner. I do not know who was more exhausted, me or him. I can hardly even imagine the tables, or should I say beds being turned. I would be such a wreck if he was the one lying here in this bed. I thank God every day for bringing him into my life.

Once the Aloxi was dripped dry, they started another anti-nausea drug called Emend. This is used to treat nausea that may occur during or within 24 hours of having the chemo treatment. I guess someone finally took me seriously! They were doing everything that they could to control my nausea and I can’t say that I blame them! A throwing up, passing out cancer girl would make a great big mess and use up a whole lot of nurse-power. Amen to that!

Next on the list was the Cytarabine; the poison that would help to save my life. I must say that it really is a bit disconcerting when anyone that handles the bag with the Cytarabine handles it with these really thick, big blue rubber gloves. The nurse explains to me that it can burn their hands if it gets onto them. I really want to know how in the world something so toxic can go into your bloodstream and not burn a hole right through it. Anything that even comes close to this med is thrown into a toxic waste bin that is near the doorway of my room.

I read everything that they printed off of the internet for me regarding this drug, took a deep breath and told them to “let it rip!” Drip, drip, drip…..I tried to calculate just how many drips it would take before it actually reached my arm. Somewhere around 672 I figured that it must be there. I waited patiently as I took deep breaths hoping that I would not have any major reactions to the drug. Since I did not have an immediate heart attack, I figured that I would live to see the bag empty. Three hours later I was done with my first round of chemo. I had some nausea, a headache and the vein that they used was totally inflamed, but other than that I seemed to tolerate the treatment well.

I am now finally dozing off, ending my second day living with CML Leukemia. I am envisioning the chemotherapy avoiding the good cells and destroying the bad ones. I must sleep as tomorrow begins Round 2 in my fight to get the heck out of here!

Tuesday, March 22, 2011

It’s Still Day 2: My First Leukapherisis Procedure and Bed Pan Exposure

February 10, 2011 has turned out to be a very, very, long day. The short reprieve was much welcomed but came to an end too quickly. About 5 o’clock in the evening, just in time for another gourmet hospital meal (hospital meals are always tastier cold), in waltzed Nelson. (Can you tell where my mind is?)  He said that he was there to perform the Leukapheresis procedure that Dr. Camacho had ordered. He said that it was a treatment to rapidly lower my white blood cells. My doctor was extremely concerned with the headaches that I had been having and did not want to complicate my leukemia with a stroke. You see, when you have an extreme amount of immature and damaged white blood cells, they can clog up your capillaries and veins, causing them to rupture, hence the risk of a stroke. My eyeballs were already affected and bleeding and I certainly did not want to start drooling, limping and needing to be fed, so I signed all of the necessary consent forms, including the ones that listed death as a possibility, and proceeded to learn all about this machine that I could.

The poor guy that had to squeeze me into the end of his day was stuck with my questions and my body’s strange responses to the treatment for 5 plus hours. He explained that the large machine was something like a dialysis machine. He was going to remove the entire volume of my blood three and a half to four times and run it through his machine removing as many white blood cells as possible.

He attached two main tubes to the catheter in my neck and then proceeded to thread them through his machine. One tube was to remove the blood, the other to return it into my body. My favorite part of the machine is a barrel looking thing where the tube wraps around and around. It is actually a heater that heats the blood before returning it to the body.

There is a window in the machine where he monitors the color of my blood. There is a chart with a graduation of color on it. It is his job to maintain the correct color, kind of a rusty/corral. He watches through a window where there is a barrel that spins the blood so fast that a strobe light is needed to get an accurate reading. Centrifugal force is used to separate the white cells from the blood.  His goal is to remove white cells; however platelets and red blood cells also sneak into the mixture so adjusting the speed can be tricky. The removed fluid goes into a bag that is hung above the machine.

While all of this technical stuff is going on, my vitals are constantly being monitored. Of course, because I am SO special, my blood pressure is extremely low 72/34 ish, and my temperature starts to climb. The process is making me nauseous and they have to keep slowing it down in order to allow my body to adjust. The RN explains that giving calcium through my IV helps with the nausea. He feels that they will need more for tomorrow’s treatment. They actually removed approximately 1075 ml of fluid containing mostly white blood cells. The whole process is exhausting.

The technician explained to me that it was normal for the white count to go down right after treatment but not to be disappointed if it went back up a bit the next morning. He said that this was the normal trend. Before the procedure my white blood cell count was 372,100. After the treatment it lowered to 273,100. The goal was to continue this process until the white cells were below 100,000. I was quite impressed that they had almost removed 100,000 of those little suckers and I pleaded with my body to remain at the low level.

The absolute worst part of this whole procedure was that I was unable to get out of bed. And the worst part of that was the fact that they continued to drip IV fluids into my body at a steady and continuous pace. Now if I had been a guy, this wouldn’t be quite the issue that it was for me. Yes, you guessed it….the dreaded Bed Pan.

Two things that I learned about the bed pan were; first and foremost call for it long before you REALLY need it and second hang on to it once you get it. I would like to tell you that I had a few tips on how to use it, but to be perfectly honest with you I still don’t know which end is the front and which end is the back. What I can tell you is that regardless of the reason you find yourself faced with the prospect of using the bed pan or wetting the bed, you had better bring your sense of humor along. That oval shaped, plastic thing is very uncooperative! When you attempt to sit upon it, it weebles and wobbles. It even has a tricky way of shooting right out from under you. They actually call it a "Slipper Bed Pan". If you are lucky the hospital staff will leave you alone, if you are not you can count on getting stage fright. The only things that I could really do were laugh and apologize over and over to Joe, saying, “I am so sorry, you weren’t supposed to have to do this until I was 80!” Fortunately we had a good laugh and have survived the day, thus far.

Sunday, March 20, 2011

Day 2 Continued: A Short Break in the Day and the Best Prizes EVER!

So here I am, settled back in my bed with 1 mg of morphine in my body. I’m thinking that since I am fading fast, now would be a great time for me to take a nap and Joe to run a few errands. He reluctantly leaves and the parade of nurses and aids begin. We all know that there really is very little rest in a hospital. Despite my blood pressure and temperature being taken and hospital administrators coming in with papers that needed to be signed, I managed to doze for a few hours.

Joe returned just as I was waking, of course he returned just in time to join another one of my pity parties. He managed to cheer me up with all of the great prizes he brought me. You would think that the best prize would be the new phone charger, but the phone charger was actually trumped by the 12 pack of Charmin toilet paper, the Double Rolls! You know you are loved by the best guy in the world when he brings you Charmin! If you’ve ever wiped with hospital toilet paper before, I  know you can relate. With all of the IV fluids that they run through your body the path to the bathroom is well blazed; I am hoping that the 12 rolls outlast my stay. He also brought Pepperidge Farm cookies, chocolate, trail mix and the greatest little bags for organizing all of my “stuff”,  that of course I wanted within my reach. He brought Chap Stick, lotion, dental floss and a soft tooth brush. They warned us that I would probably get mouth sores from the chemo.

 I had such a great time filling all of the little pockets in the bags and they hung perfectly on the rails of the bed. I know that I am easily amused, but just having everything I needed within my own reach made a huge difference. It is very difficult for me to be dependent on others for anything, let alone for every little thing. I have been a mother for 32 years and it is my nature to do everything, for everyone. I hate being helpless and dependent. Hmmmm, maybe that is part of my new lesson, I will have to ponder that thought.

Being stuck in a hospital bed when your plans were to be heading home and going dancing is just a bit frustrating. I found myself flitting back and forth between disbelief and irritation. Just as I was about to give in to my whiney side, a lady showed up carrying a stuffed white bear. I was totally confused and figured she must be in the wrong room. I apologized for being so cranky and she said that she was sure that the bear she was bringing would cheer me up. The bear was for me? Really? I took the soft white bear and read the card. It was a gift from a very new friend. She and I had just recently met at a dance event. I was quite surprised at the thoughtfulness and generosity of someone I hardly even knew.

In the coming days and weeks she became a great support as she really understood what I was going through. She has become a great friend and is a cancer survivor. The little white bear was a savior in many ways, one being comfort for the soul, the other comfort for my elbows! The sheets on the hospital beds are so very ruff that my elbows were being rubbed raw. I lived with the bear under one arm and then the other, the entire time I was there. She also kept me company when I was alone. A true life and elbow saver! Thank you, dear friend for your thoughtfulness.

A quick tip: the Hypo-allergenic sheets in the hospital are much softer than the regular ones; but you have to ask for them.

Saturday, March 12, 2011

Day 2 Continued: Insertion of My Catheter for Leukapherisis

With the bone marrow biopsy complete, the medical staff did not waste any time and the people that were there to transport me to my next activity were ready and waiting. My hard old bones put them behind schedule. I barely had time to go to the bathroom before I was whisked away in a hospital bed. And if you are on IV fluids, you know how important that is!

I was looking for Joe but he was nowhere to been seen. I was really hoping to get that reassuring hug from him that would make the next procedure more tolerable. But the hospital bed transport Nazi wasn’t having any part of the “Where’s Joe?” game and whisked me quickly into the elevator. Turns out he was just around the corner making phone calls. I asked them to tell him how long I was going to be gone and to feel free to run the errands that he needed to run. Most important errand was to buy phone chargers as both of our cell phones were dead. The only phone number that both of us know by heart are our parents. You know how it is these days; you look up the person’s name in your phone and hit send. I don’t even know my children’s phone numbers.

So, off I go to the first floor of the hospital. There are three people in surgical gowns waiting for me. I was transferred from the moving bed to a table that had ex-ray machines and three monitors lurking above it. I was asked my name and date of birth and told that they would be with me shortly. I told them that I was freezing, partly from the temperature of the room and partly from nerves; they brought me one of those really expensive warm blankets. I told them that it looked like a construction site in here. There were all kinds of machines and metal arms that would move them from place to place. Of course, it looked like a very sterile construction site, but a construction site none the less.

I think that I must have arrived at lunch time as I could smell food  and there were several green cloaked people all gathered in a room just off of the room that I was in. Eventually one of the guys came in and told me what they were planning to do. They were going to insert a temporary right internal jugular vein leukopheresis catheter into the tip of the right atrium of my heart. Sounds fun, huh? Of course I asked about a thousand questions, first one was just how painful is this procedure? I told them about my bone marrow biopsy and they were surprised that I had not been given anything to combat the pain. Second question was how did they know when they got the catheter into the heart and how were they going to make sure that they didn’t puncture anything along the way? They assured me that they would be using direct ultrasound visualization and would be watching exactly where they were placing the tube.

This whole procedure starts with another one of those cloth/paper drapes with a hole in it. I was told to lay flat on my back and to turn my head to the left and leave it there. Once my face was covered and my neck exposed, they started to swab my neck with an antiseptic. Once again they walked away. They were chatting in the other room and I was having a pity party under my drape. Don’t leave a girl with leukemia too much time to think. Under the drape I was all alone with just myself and my thoughts, no visual distractions. A tech finally peeked his head under my drape to see my face and asked me if I was OK. I told him that I was great for a girl who had woken up with leukemia. We laughed and the procedure began.

The head honcho dude promised that he would tell me everything that they were doing and he did! He began by numbing the area. This stung a bit, but nothing like the bone marrow biopsy. He promised that once the area was numb that I wouldn’t feel anything except pressure. Luckily for the both of us he was right. Once the area was numb he proceeded to make a small incision in my neck to reach the jugular vein. The only real thing I felt while he was doing this was wetness on my neck. Yes, my cancerous blood was dripping down my neck, yuck. Once he made the incision, he began to thread a wire through it. He repeated this process over and over enlarging the opening. Other than a whole lot of pushing and tugging in and out, the process really wasn’t painful, just disgusting.

As they were doing all of this pushing and pulling they were using the ultrasound and taking pictures. They were also talking about the wires and I asked them why all of the discussion. They told me that they always bet on the length of the final catheter, the one that would reach the heart. I told them I get half the winnings and wanted to make a bet, too! Since the numbers ranged from 16cm to 21cm I chose 19cm. The guy that was shoving the enlarging wires in and out said 20cm and the ultrasound tech said 18cm. Turns out that I needed a 17.5cm catheter and they do not make one that size, so no winners and I got a 20cm catheter that stuck out of my neck and was taped up and really annoying.

They finished their business and used two sutures on either side of the catheter to hold it in place. They taped me up and sent me on my way. Unfortunately the transport Nazi was at lunch and I was left to hang out in the hallway with three other patients on rolling beds. After about 20 minutes I asked the gal in charge which way it was to my room. She asked why I wanted to know and I told her that I was starving and that I was sure that my cold lunch was upstairs waiting for me and that I intended to walk back to my room. She freaked out, got on the phone and someone was there to get me in less than a minute! I really wasn’t all that hungry, I was just anxious to get back to my room where I knew love and comfort was waiting.

And yes,  Joe was sitting there waiting for me in my room. The nurses didn’t give him my message and he had no idea where I had gone or how long I would be. I often think that it is harder on the healthy person than the sick one. All of the waiting and watching and feeling helpless and scared, of course, he would never let on that any of this bothered him. Once back in my room and in his arms I had another pity party. This one lasted longer.

It wasn’t until the lidocaine wore off that my neck started to ache and I realized that the way that they taped up my neck prevented me from turning and moving my head freely. So now I had an aching bum, neck and a romp stomping headache. The doctor came in and I let him have it! He said, “Well, that is why I ordered morphine for you, I don’t want you to be in pain.” I asked if he could add Tylenol and he said he would. I was so miserable that I finally agreed to try half the dose of the morphine, that being 2 mg. The poor nurse got 1 mg into my IV and I told her “Enough, Stop!” I was already loopy and didn’t want to go any further into la-la land. I am already tu-ca-lu enough without any help. It did however take the edge off of the pain and it never returned to that intensity. Verdict, Jugular Catheter procedure much less painful than a Bone Marrow Biopsy!

Wednesday, March 9, 2011

Day 2: The Battle Against Leukemia Begins! The Bone Marrow Biopsy

It is Wednesday, February 9, 2011 and the worst part of this experience is mostly behind me. The worst part for me was telling the ones I love that I have leukemia. It makes it more real when everyone knows. When I only knew, I could almost pretend that it wasn't true, but once it is out there in the universe all bets are off!

My day began with a bone marrow biopsy. Don't ever let anyone tell you that it is uncomfortable, but not that painful! I asked the nurses and even the doctor if they were going to give me anything to make the procedure easier. They all said no. I wasn’t happy and I was a bit baffled. Last night I told the nurse that I had a headache. It was around midnight. She called my doctor, woke him up, and he ordered 4 mg of morphine. She comes in with a syringe and I ask her what it is. Morphine! Morphine for a headache??? Come on, a bit overkill. I told her that I was thinking more along the lines of Tylenol, but she said that he didn’t order that. I told her thanks, but no thanks, I needed to have my wits about me so that I could keep an eye on them. I asked for an ice pack instead. This is why I am a bit baffled by the lack of medication for the bone marrow biopsy. I think it was my doctor’s way of punishing me for waking him up!

Now, for the biopsy itself, two doctors come walking in and tell me they are there to do the procedure. Mind you one of the doctors is of average size, the other one.....well think of the Indian in "One Flew Over the Cuckoo's Nest", I said, "So, you are doing the procedure and he is going to hold me down, right?".  I ask THEM if they are going to give me anything to make this easier and they too said no, “It will only take 5 – 10 minutes with minor discomfort.”  They ask Joe to leave, I protest and I lose. So now the score is doctors 2, patient 0. They raise my bed and ask me to roll over onto my right side. I ask them to tell me everything that they are going to do, BEFORE they do it. This plan starts off well and then takes a nose dive!

The first thing he does is cover the backside of my rear end with a paper like cloth with a hole in it. He states that this is going to be a simple biopsy as he can easily locate my hip bone. He swabs on antiseptic and tells me that he is going to numb the area. The numbing consists of my skin, and the muscles and tissue down TO the bone. It burns and stings but isn’t unbearably painful. Next I feel some pressure and ask him what he is doing. He replies’ “The biopsy.” Duh! Not exactly what I had in my, I ask him to be more specific and he says that he is now going to penetrate the bone. This is where the real fun begins.

I feel a ton of pressure and moderate pain. I am hanging in there and ask him how much longer. He says, “Awhile”, once again, not a good answer! I feel him starting to twist and really pound on the needle in my hip. I literally start screaming, “Ow, Ow, Ow, Ow, OW!” “How much longer?”, “Are you almost through the bone?” His reply, “For a skinny little girl like you, you sure have hard bones!” Great, right?

He continues to pound and I finally feel a pop. Of course, I think that we are through the bone and done, except for the aspiration. Wrong! He continues to twist and pound as he is surprised that this still hurts. The pain is excruciating and I am screaming. They call for another nurse, to calm me down and hold me still. I am begging for a sledge hammer to hit me in the head.  I ask how much longer and he tells me that he has to do it again, in another location. I am in tears and so much pain that I do not know how I am going to make it through this experience again.

He removes the needle and starts over. This time it is even worse. I am now getting sharp pains down my leg in addition to the pain of him penetrating the bone. I am continually asking for updates and how much longer. He is very uncooperative and the nurse finally says about 3-5 more minutes. This helps tremendously as now there is an end in sight.

He finally says that we are almost done and that he is going to pull out the marrow. Now that is the oddest sensation ever. It hurts like crazy and feels as if they are pulling your insides out from your toes. The only good thing about it is that it means that you are almost finished. The needle comes out and you are left with the same feeling as a toothache, in your hip. The ache subsides after a few days. Needless to say, I have quite a few nasty words to say to the doctor and inform him that I will NEVER go through that again without being medicated or knocked out cold! The procedure lasted 35 minutes, a far cry from 5-10 minutes. I’ll take that morphine now, please!

For those of you that are not faint at heart. This girl is my hero. She did so much better than me. It also seems as though they froze her bone. I wonder why they didn't freeze mine.

Tuesday, March 8, 2011

How to Tell Your Children that You Have Leukemia; Facebook is Not a Good Idea!

My Crazy Family! (Joe's taking the picture)

It is now February 9, 2011 and I have known that I have leukemia for 24 hours. I am currently checked into the 4 star Desert Regional Medical Center in Palm Springs, Ca. The weather is beautiful this time of year and I have an awesome view from my window.

They have a big day planned for me, lots of activities! I wasn’t planning on telling my three children about the leukemia until I had a confirmation from the bone marrow biopsy, but I am a little concerned that I may be feeling so bad by the end of the day that I won’t be able to make the calls. I decide to call my daughter before she goes to work because she doesn’t get off until 6 pm.

My daughter is a treasure, she has suffered much loss in her life and we are extremely close.  She may be 32 years old, but she is still my little girl! I pick up the phone and call her, as always she is excited to hear from me. I tell her that I am still in Palm Springs and in the hospital. I tell her that I am going to be fine, but that I have leukemia. I immediately hear crying, and I tell her again that I am going to be fine. She calms down and begins asking questions and tells me that she is on her way. I manage to convince her to wait a day or two to see what we were facing; I reassure her that Joe is taking great care of me and that I was OK. I told her I loved her, said good bye and burst into tears.  One down, two to go.

My son and his wonderful family!
My son and his family live in Arizona. They are gifts from God, full of life, hope and promise. It is so hard not being closer (in distance) to them. I decide to call my other daughter (in law) and fill her in. She answers the phone saying, “It’s a good thing you called me!” I just read that you have leukemia on Facebook! Ugh! My daughter, asking for prayers, freaked out and scared, looking for support. Sure glad I made phone call number two! I filled her in and told her to tell my son when he got off work. I also told her that I wasn’t planning on telling #3 until he got home from school.

My daughter, youngest son and grandson!
My third and youngest son is a blessing. He and I spent 10 years together. He was my Valentine’s date, my movie goer and my El Jacalito dinner date for years! My cruise buddy and everyday joy. He watched me go through my ovarian tumor “stage” and helped me get back on my feet. How do I tell him that I have leukemia? He is only 17 and has to deal with me being sick again. I am planning on telling him after school, as I should have confirmation on the type of leukemia that I have. If it is CML, like they are thinking, then my prognosis and treatment will be much less scary.

Of course, since this has already been posted on Facebook, and news travels quickly, my youngest son finds out, somehow during school. He gets to worry and wonder until he is able to call me. I felt so incredibly horrible that I was not able to tell him myself, to be able to reassure him that I was going to be OK. What a terrible way to find out that your mother has leukemia. He knew that I had seen Dr. Han the day before and that I was having more tests, so while I am sure that he was not completely shocked, I am sure that he did not expect this any more than I did.

So now I understand just how my mother felt when I told her. When your children hurt, you hurt hundreds of times more. I think that knowing that they are scared and concerned about me is more difficult than dealing with this disease. I am going to be fine, I have to be! I have the most amazing children and grandchildren that a mother could ever hope for and I cherish every moment that I have with them.

Modern technology can be a blessing and a curse. Of course, my daughter quickly realized what she had done, and deleted the post almost immediately, but I guess that a few minutes on Facebook is all it takes! Hence, important information should be reported directly to your family before getting posted on Facebook

Saturday, March 5, 2011

A Day in the Emergency Room: February 9, 2011

I am not sure whether or not I mentioned that I was visiting with my folks in Palm Desert, Ca. when I got this lovely news. I asked the doctor if I could drive myself to the Desert Regional Medical Center ER in Palm Springs and he said no, so I went searching for my Dad to ask him to drive me there. I ran into my Mother and had to spill the beans. She was just as shocked as I was and probably even more devastated. If you are a parent, I am sure that you can relate. When your kids hurt, you hurt even more.

I packed up my toothbrush, a book, my phone, my jammies and my pillow and hopped into the car with my Dad. I’m not sure if he was just freaked out or in a hurry to get me there, but it was a wild ride! He was very positive and supportive and told me not to worry.

I arrived at the emergency room and they were expecting me, how weird is that? They took me directly to the triage nurse and told me that they would have a bed for me within 30 minutes. The fact that I had leukemia still hadn’t sunk in. Once I was in my bed in the ER the IV’s, blood tests, chest x-rays and ECG’s began. Then came all of the questions: the first one being “How in the world are you even still walking with such a high white blood cell count?” My response was simply that I did not even know that I was sick. I had danced hard 4 days prior for 3 hours and mowed the lawn 3 days ago. I had planned to go dancing that night. They were amazed and I was stunned!

I spent the entire day in the ER, and to the misfortune of the nurses, my bed was directly across from their station. I was able to call and ask them anything I wanted at any time. Whenever they told me to take a drug, I insisted that they printed out the information on that particular drug and made them give me a viable answer as to why I was taking it. I was not about to be poisoned by another floroquinilone!

I pleaded with them to print off any information they could find regarding leukemia and asked for print outs of all of my lab reports. I knew nothing about leukemia and I really feel that as a patient, it is my responsibility to educate myself. I am sure that I drove them crazy and they were very glad to see me to my room at 7:30 that night.

Several doctors came in throughout the day to check on my vitals and blood counts and the nurses were very helpful. When my “new” doctor finally arrived on the scene, we were both quite surprised to see each other. You see, the previous evening as I was leaving my doctor visit, another Dr. was in the elevator with me. He looked at me and asked if I was “OK”. I said that I was and he asked if I was sure. I said yes, that I was just thinking about some tests that I was to take the next day. Of course, what I was thinking was “What, Don’t I look OK???” And wouldn’t you know it, as luck would have it, he was my new doctor! I must say that life is odd at times.

Dr. Elber Camacho, a name that took me the better part of three days to remember, told me to plan on being in the hospital for at least a week. I asked him if I was going to die. He said no, not if he can help it. I asked him if my hair was going to fall out and he said that he didn’t know.  I told him that I supposed it was OK if it did as I always wanted better hair anyway. He told me that he was relatively certain that I had Chronic Myelogenous Leukemia and was concerned that I was in blast crisis. He said he would do a bone marrow biopsy in the morning and start me on leukapherisis and chemo when the diagnosis was confirmed. He asked about siblings for a bone marrow transplant and told me not to worry.

Luckily Joe had arrived by mid-afternoon and was there to keep me from falling apart. He was also terrific at remembering all of the information that we were getting from the doctors and nurses. He was also great at asking really important questions, like; “Do we need to cancel our trip to Cabo next month?” Just kidding there, he did ask that question, but he was really great at asking some really important medical questions, too. And yes, we had to cancel our trip! Leave it to me to take an early vacation. I guess I will give Desert Hospital in Palm Springs 4 stars!

Friday, March 4, 2011

Leukemia Phone Calls

OK, so here I am, visiting my parents in Palm Desert. I have just been told that I have Leukemia; by phone. I hadn't been ill and was just seeing my doctor for a routine check-up. I didn’t anticipate any serious complications, even though looking back, I did have minor symptoms.

I live in North Hills, two hours away with the love of my life. I am expected home that day in time to teach our weekly Country 2 Step classes at The Borderline in Thousand Oaks, Ca. He knows that I had seen my doctor the previous day and was supposed to have a CAT scan that afternoon. We really were not overly concerned. Shortly after telling him that my CAT scan was scheduled for 1:00 pm that day, my doctor called with the news. Ugh! What do I do now? Call him back at work or wait until he gets off.

Of course, I could not wait. I needed to talk to him, to hear his voice, for him to tell me that everything was going to be OK. My first thought as I was dialing the phone was, “Well, this is surely a make-it or break-it kind of phone call!” I guess we’ll see just what we are both made of and how our relationship will endure.

I am sure that he was as shocked and scared as I was, but he never let me know it. He was calm and collected and said he would be there as soon as he could. He went home and called to see what I wanted him to bring from home. He remembered everything except our phone chargers, and if you are like me, you know what that means. You cannot call anyone, because you don’t know their number! It was a blessing in disguise as I was too exhausted mentally and physically to even talk on the phone.

I decided to wait until morning to call my children. I wanted to have more information and know exactly what we were dealing with before burdening them with the reality that their mother has cancer. As a mother it is very difficult to tell your children anything that will cause them sadness or worry. I figured one more night without worrying about me would be a good thing. Besides, imagining not being around to share their lives and families is more than I can bear. I just could not bring myself to say the words, “I have leukemia” one more time that day. So with that decision made, I headed to the Emergency Room.

Bricks for the Brave!!