Monday, June 30, 2008
Today is Tuesday June 10, 2008 and tomorrow is my last appointment with my BMT doctors. YAY......can I actually be at the end of this part of the journey? Thinking about this brings both exciting and scary thoughts. Exciting because I actually get to go home.....and scary because I actually get to go home!!!! I have been so taken care of here....in a little bubble or cocoon.....and now I have to become a butterfly and fly away home. Being here and knowing that I am in capable hands...... if something goes wrong, Moffitt is only minutes away.....and now I'll be going home where I'm "on my own" so to speak. Yes, Ashley is home and Mom lives 3 miles away, so of course I'm not alone, but after 6 weeks of being "Bubble Girl" it just brings up some weird feelings. The overwhelming feeling of all though is "I'M GOING HOME!!!!". Hopefully I'm not being too cocky here as I have not seen or been discharged by the doctor yet, like I said I see them tomorrow, but they didn't want to see me today because I'm doing so well and that's a good sign, and I'm just going by what Dr. Laura said on Monday. After I write this entry, I need to make a list of issues I need clarification on so I'll have all my ducks in a row when I do see the doctors tomorrow. I need to go over what I can and cannot do, restrictions etc. etc. as the BMT Transplant Book we have read about a bajillion times says I will need assistance at home for the next 3 months, cannot drive for that long etc etc, so I just want to go over some things with them so I'm totally clear on what I can and cannot do. So, as it stands now, we go to the BMT clinic at 10:00 for the usual.......the bloodwork.....wait for the results...meet with doctors.....and I'll know more after that. Keep your fingers crossed all goes well :-) <------ That's me with a big smile on my face!
Saturday, June 28, 2008
This entry is written for the dates Wed. June 4th to Tues. June 10th, basically the 2nd week after being discharged from the hospital. As I said, the mucositis was finally slowing down, but I did have a scary relapse of it on Wed 6/4. The hellacious diarrhea and the throwing up of the evil mucousy foreign monster matter, returned for a little encore this morning, but after it was over, I felt halfway decent the rest of the day. It really bummed me out though, because you begin to think you're on the mend, and then BOOM!......gotcha. Damn Chemo! My weight on 6/4 was 99.6. After the morning "episode" though, like I said, I did start feeling a bit better. It turned out to be my last "hurrah", thank goodness. On Thur. 6/5, I had my usual appt at the BMT clinic. I weighed 98.4 and my blood pressure, lab work and electrolytes are A-OK, so no IV's needed today.....YAY! Kate and I had seen that Moffitt has many kinds of "alternative" therapies they offer to cancer patients and their families, like Art Therapy and Music Therapy, Massage, Acupuncture etc. Well, we had been wanting to attend an Art Therapy class as we had gone by the studio before and it had some really fun looking pieces of artwork in there, and today, since I didn't have a "drip" and it was at the same time we were leaving the BMT clinic, we went to the floor where the Art Room was located and went in. There were 2 women there.....one was the Art Therapist and the other woman was a volunteer. The volunteer had been there for many years and got involved volunteering as her husband was a cancer patient there and she herself was an artist, so she willingly and lovingly volunteered her time at Moffitt. Our session began with a beautiful meditation led by the Art Therapist and then she explained that we would be "painting on silk" and that we were to open our minds to whatever was there and not to structure our artwork. Kate and I were there for about 2 hours, talking and painting and having a great time!! What a way to get your mind off cancer. I've always believed that pursuits of any kind whether it be writing, or art or meditation etc. is always a good way to nurture the soul......and Moffitt assisted us when we needed it. What a joy to see the finished product as well as enjoy our time with "new friends" familiar with the cancer world. There was also one other student in the class besides Kate and me......she had been a patient at Moffitt and still comes back for her check-ups and to frequently attend Art therapy classes because she said they meant so much to her when she was an in-patient and the classes helped with her healing. She was in her 30's and had ovarian cancer, but is doing well these days. She is now in my prayers. Kate and I made beautiful silk scarves that day and had a great time bonding with our new friends and each other!! On Friday 6/6, I went to the BMT clinic for a dressing change on my central line, and as usual they took my blood pressure, pulse and weight which was 99.2. I did not have to have my bloodwork drawn so as soon as my dressing change was done I was OFF for the entire day AND I DID NOT have to return to the clinic on Saturday 6/7 or Sunday 6/8!! WOO HOO!! So what's that tell you???? I AM GETTING BETTER AND BETTER if they don't want to see me that often!! On Monday 6/9 I had my usual BMT appt. They of course, do the usual with the weight (96.1) and blood pressure and blood draw. We then go back into a room and wait for my lab work to get back and then Dr. Laura comes in to discuss the lab results. (That's always the way a typical appt was). Laura comes in and we tell her how I'm doing and she asks her questions, etc and then she says that I am doing so well, that we will set up a discharge date. I almost rolled off the bed! Are you serious?? Am I actually nearing the end of this part of the journey?? WHOA .... She said I did not have to return to the BMT clinic tomorrow (Tues 6/10) and that I would have my usual appt at the BMT on Wed 6/11 with her and Dr. Ben and then on Thurs. 6/12 I would have an appt with the out-patient surgery dept to have the central line pulled out of my chest, and then I would be able to go home. I couldn't believe those words!! We were all so excited! So we all went back to the apt in a happy happy joy joy mood!! We got to talking about how I only had a few more days left and Kate really needed to get back home as she is starting her own business and had much work to do as her meeting with the pediatrician she was working with was on that following Monday. Long story short....we finally talked her into going home on Tuesday morning 6/5 because there was really nothing more to do that Mom and I couldn't handle. I was well enough that no one was giving me meds in the middle of the night for at least a week by now......no more "incidents" have occurred, I'm feeling better every day, so we would really only have our last appt with the doctors on Wed and the "pulling of the tube" on Thur and we're outta here ourselves!! So it was a sad, yet happy day when Kate was all packed and returned home on Tuesday 6/10. Mom and I are only 2 days behind her......YAY
Thursday, June 26, 2008
I really can't begin to tell you how wonderful each and every person in the BMT Clinic is. I don't know if Moffitt makes them take a "caring-niceness-thoughtful-sweet-person" test but each and every one would pass with flying colors. After being there for 6 weeks, of course you find yourself having favorites and gravitate towards certain people, but only because your sense of humor is similar or you both open up to each other sharing personal stories etc etc., not because one person is nicer or sweeter than the other. My family and I got close to several of the nurses......and I want to mention them by name. First there is Maureen, a beautiful soul....she took my weight, blood pressure, temperature and blood on most of my days at Moffitt and greeted me and my family with such care and concern and the most wonderful smile that just couldn't help but to start your day off right. Then there was Darlene . She was the nurse that took care of me for my 3 days of Apheresis and introduced me to what my new artistic interest is.....the actual making of Glass Beads. She gave me some glass making books while I was having apheresis and that ignited my interest. I've always had some artistic pursuit going on at any given time in my life, but working with glass rods to make glass beads, is a new one for me. I've made my own jewelry for years ,as jewelry has always been a passion for me, so now I can make the beads that make the jewelry! Can't wait to start!! Another of my nurses is Jessica, or Jess as we called her. She was the nurse that was exclusively mine for the 2 days I received chemotherapy. She is a loving and caring person with a great sense of humor and we enjoyed every minute together. That brings me to another nurse, Vicky. She is the nurse that spent the entire Transplant Day with me, making sure I came through it ok and she watched me like a hawk!! Lots of people have reactions, so us transplant folks are monitored very closely. Vicky shared my new Birthday Party with us and laughed hard right along with us. She is truly one of the most innately sweet people you will ever meet. She shared parts of her life with us too (about an upcoming pound puppy adoption among other things) and she's just a person that played a big part in my Transplant process. Next comes Linda. She is such a special person. She greeted us everyday with a warm hug and a smile and was a patient and loving teacher when spending hours with us about central line care, showering instructions, and pretty much anything else you could thing of. She took care of me on many of my days there and my Transplant wouldn't have been the same without her. Dare I say THE most important person throughout my entire stay at Moffitt Cancer Center is "Dr. Laura". Laura is actually not a Doctor at all, she is an ARNP which is a Nurse Practitioner. She has worked at Moffitt in the Outpatient Bone Marrow Treatment Center (BMT) for the last 12 years. She is the most fantastic person you would ever meet. Knowledgeable, smart, funny, adorable, understanding, patient.......the list of her qualities are truly endless. I saw Laura every day. No one EVER felt rushed......we ALWAYS had our questions answered......she ALWAYS followed through......she discussed medication changes with us and why.......asked for my feedback as well as Mom and Kate's......thoroughly explained any and all test results and follow up treatments.....in other words , she is the kind of "doctor" everyone should have. I saw my actual Transplant doctor once a week and of course it was Laura who filled him in on what was going on and made recommendations about me. We know who the "Real" doctor is!! Both my family and I cannot say enough wonderful things about Laura and we really can't imagine going through such a life changing experience without her running the show. She made it as wonderful as something like this can be!! I just wanted to give my "shout outs" and "high 5's all around", as I feel so lucky and fortunate to have had all of these awesome people in my life at a time when the people who surround you really do give you strength and hope.....and I couldn't have had a better group than if I had handpicked them myself. The universe sends people into your life when you need them the most.
This week has been pretty rough.......for all of us. I am still dealing with the Mucositis, which means the nausea, throwing up and diarrhea continues, just not as severe or as frequent as it had been in the hospital. Poor Mom and Kate are still having to wake themselves up twice in the middle of the nite to give me my medication that helps to control all of these symptoms. They are still helping me into and out of the bathroom for my "episodes". For the first 3 days back at the apartment I was so weak it took great effort to walk out to the car, and when we got to Moffitt, I needed a wheelchair as I couldn't walk to the 4th floor BMT clinic. My weight has also dropped from the 110 lbs. on Thurs. the 29th to 105 on Fri. May 30th to 101.2 on Saturday the 31st of May. I also required 8 hour IV drips through my central line because my electrolytes were still doing the "hokey-pokey". The next 4 days though showed some slow but sure improvements as I was only on the IV drips for 4 to 6 hours at a time rather than the 8 hours and I was able to walk to the BMT clinic rather than use a wheelchair. YAY...... My medications for the mucositis was decreased so Mom and Kate were getting up once in the middle of the nite , rather than twice. My appetite was still pretty sucky, but I tried and tried to eat to no avail. It's so hard to eat when you aren't hungry or feel nauseous. At the end of the first week home from the hospital the Date was Tuesday June 3rd and my weight was 101 lbs. I'm getting better and that's what you focus on.....the improvements day by day.
Wednesday, June 25, 2008
Woo Hoo......on Wednesday May 28th, at 10:00 pm, I was discharged from the hospital, back to the apartment. I was really really glad to be out of the hospital and looked forward to actually sleeping in a normal bed! We didn't get discharged until late, which I always thought was weird when hospitals do that, but hey......I'm out and that's what matters. The reason I was discharged wasn't because I was "all better", but I wasn't in an acute condition. My fever was gone and the lasix they had been giving me had taken care of the outrageous swelling, and I was keeping down my oral medication, which was a big one! So, we're back at the apartment now, but I've still got a ways to go.
Monday, June 23, 2008
Just a quick entry here.......From the beginning of this journey I said to myself that just because I have cancer.....and just because I will be a cancer patient in a cancer hospital receiving treatment for cancer, DOES NOT mean I have to LOOK like a Cancer patient. At least, with what little control and power I have, over the situation I still have some choices. So every day, except for the time in the hospital, I made a conscious effort to put on make-up EVERYDAY before going to the BMT Clinic. Thankfully, the chemotherapy did not rob me of my eyelashes or eyebrows (thinned them out, but didn't make them disappear) so everyday I put on mascara and eyebrow brush and blush and lip gloss and finally the bronzer! Doing this made me feel "normal", made me feel feminine and feel like a woman, even though my hair was gone. I also made an effort to dress cute and stylish, like I normally do. It would have been easier to wear pajamas or just a T-shirt and ratty comfortable pants because you are stuck in a bed or recliner all day you're there, but I didn't. I dressed in cute dresses or capris with my cute little shirts and I made sure that my scarf or hat matched my outfit. I can tell you that not one day went by that someone in the BMT clinic didn't compliment or tell me I looked cute or stylish. That feels good when you are being treated for cancer and you have no hair and aren't feeling so particularly attractive! I guess my whole point to this rambling, is you should do the things that are in your power to make YOU feel good about YOU. Again, my treasured Serenity Prayer comes to mind......"God,grant me the serenity to Accept the things I cannot change, Courage to change the things I can, and the Wisdom to know the Difference". And I knew that putting on make-up and OMG....let's not forget my "BLINGIE" EARRINGS that I am famous for, well, it would just bring some normalcy to a situation that is so very far from normal as you can get!!
Sunday, June 22, 2008
They told me that about 10 days to 14 days after receiving chemotherapy, that I would begin losing my hair. And I'll be damned if I wasn't pretty much on schedule. At about the 10 day mark I would comb my hair and comb-fulls would come out. It's such a strange feeling watching yourself in the mirror combing your hair and tons of hair coming out with it! As each day went by more and more hair would fall out. The thing about the hair falling out though, is that it DOES NOT fall out evenly. I would have a spots that was as bare as a baby's bottom and then another spot that wasn't affected at all. Talk about weird!! So the bottom line is I began to look like the Crypt Keeper!! Remember him from introducing those scary movies on Friday or Saturday nights back in the day? LOL....it really was quite comical because if you lost your hair at an even pace all around your head it wouldn't be so bad. I was mentally prepared for the hair loss but knowing you will lose your hair and losing your hair is quite the different thing and I think that somewhere in the way back of my brain was "maybe you'll only lose a little hair and you won't even be able to tell". HA HA HA.....nope folks......not true not true!! I even made myself laugh when I wrote that!! During my hospital stay, Mom cut what was left of my hair into a blunt chin length cut, as not all my hair was gone....hence Crypt Keeper. But a few days after I got home from the hospital, I said to hell with this.....It's looking worse and worse everyday and we finally took the scissors to it and just cut the rest down to the nubs!! OMG.....I look like Howie Mandel. So I ask you......Deal or No Deal? LOL....oh well........think of all the money I'll save on shampoo and conditioner over the next year or so? The money I'll save on hair products like gel and hairspray? And the time I save getting ready to go somewhere?.....PRICELESS!! As the women reading this know the most time consuming thing about "getting ready" is doing our hair! And where do you think the saying "having a bad hair day" is from? Us women really tie our looks to how our hair looks most days, so when our hair looks crappy it has the power to make us feel crappy. LOL...... How dumb is that? Just to let ya'll know it's actually been quite a freeing feeling not having hair. I did wear scarves and some cute little hats when in the hospital and BMT clinic but at the apartment I don't wear anything. I even brought 1 of my 3 wigs to Tampa but didn't wear it as the scarves and hats were just fine. I kinda like not having hair now. It feels really weird and of course looks really weird and I get caught off guard when I see myself in the mirror, but I suppose I'll get used to it. It's just the combination of being so skinny AND the baldness makes me look like a prisoner at a concentration camp! My hair grows so slow too that I have a feeling I'm going to have LOTS of awkward stages till my hair grows back to a respectable length, so I'm really looking forward to those!!
I was admitted to the Hospital wing of Moffitt around 10:00 pm on Thursday May 22nd and was discharged on Tuesday May 27th. I must admit that much of what I am relating to you now is based on the meticulous note taking by Kate, Mom and Lindsay and what they have since told me, as much of the hospital stay is a blur to me. I remember some things, of course, but I could not tell you on which day a particular thing happened. It never ceases to amaze me that when they would tell me something about the hospital stay, I can really truly say I don't remember that. I was so sick the entire time I was there, that I assume that is our minds way of coping. Who wants to remember this kind of horror story anyway? :) Not me, obviously!! If you have ever been admitted to the hospital for any length of time, there is a "surreal-ness" that occurs....at least for me it does. The fact the each day is identical to the one before it may contribute to this I think. The only way I really knew there were changes in my day was because a different nurse would come into my room or when there was a "changing of the guard" between Kate, Mom and Lindsay. When nurses, techs, respiratory therapists, doctors, dietary people etc. are marching in and out of your room at all times of the day and night hanging IV bags, or turning off the incessant damn beeping of those machines ( thought I would lose my mind on several occasions), when people are coming in to weigh you, take your temperature and blood pressure, to give you medications, give you shots, and perform all kinds of other necessary "stuff" it makes you lose track of time. Half the time I didn't know if it was night or day. I really won't tell you ALL the things that happened during my stay as alot of it is repetitious. Just know that I have never experienced so much mucous, diarrhea, vomiting and nauseousness, all uncontrollable. I was cleaned up so many times by my family it was ridiculous. I would just get cleaned up from one "incident" when I would literally have another "incident" and we'd have to go through the same thing again. My poor family. I had severe sleep deprivation caused by not being able to sleep without interruptions. So all of this contributed to that surreal feeling I was telling you about. Just a mention about my weight here too. When I was admitted to the hospital on the 22nd I weighed 106.3. I was weighed everyday,, as to keep track of intake and output was important when going through a BMT. I was receiving so many fluids through the central line in my chest that my weight ballooned to 119.2 while I was in the hospital!! We actually did get a good laugh at that as we knew it was not the kind of weight we WANTED to see on me, you could tell it was from all the fluids I was getting. I was blown up like a balloon....my toes looked like little vienna sausages and I had "cankles" for the 1st time in my life!! My rings were practically swelling over my fingers. Needless to say they cut back on all the fluids I was taking and I've never peed so much in my life as the last 2 days before I was discharged!! I actually went from the 119.2 to 110 in one day, so you do the simple math!! Also during this time, there was awhile when my pills "came out" without being absorbed so all my medications were given IV and they chose to place ANOTHER line in my right arm so I could self administer dilaudid for pain. Thankfully that line was only in for 2 days before I was discharged. To wrap up the in-patient trauma and drama, just know that I was given so many antibiotics, platelets, potassium, anti-fungals, anti -virals, ativan, drugs that stop nausea, magnesium and so many other electrolytes and my regular medications that I was thrilled to be discharged and get back to what had become our regular routine at the apartment. I just know that once again, without my family there with me I would have been so lost. They were my only grip on what sanity I did have left. They cleaned me up, bathed me, practically fed me, spent every night with me so I wouldn't be alone and were my advocates in every way possible. A special shout out to Lindsay as she came every weekend from Gainesville and when she was there it gave Kate and my Mom a little break which they really needed, and she spent her weekend nights on a crappy lounge type chair before we got moved into a room that had a cot in it for "guests"! The bottom line to this in-patient hospital stay was the chemotherapy had given me such mucositis that it had developed "sores" all in my gastrointestinal tract and caused all these problems. Icing like I did prevented the mucositis in my mouth and upper GI tract but there was nothing to do to protect the lower GI system, so there ya go! Thanks chemo for all the good memories!!
Friday, June 20, 2008
There are many symptoms from having High Dose Chemotherapy and one of them is called Mucositis. I forgot to mention when I was talking to you about receiving the chemotherapy for 2 days that a really important part.....see? CHEMO BRAIN..... as I was saying the really important part of those days was CONSTANTLY having ICE CHIPS in my mouth. Studies have shown that if the patient uses ice while receiving chemo, the chances of developing mucositis in the mouth decreases significantly. I was rabid about keeping ice in my mouth for 2 solid days because there is not that many things that I can control in this situation and I'll be damned if I wasn't going to embrace what I could control. I am very proud to say that I had ABSOLUTELY NO MOUTH SORES because of what I did. The problem is however that even though I kept my mouth from getting mucositis, there was no guarantees for the rest of my GI tract. That, my friends was up for grabs! I couldn't make the ice go down any further or believe me I would have. So, I started experiencing some of the GI symptoms of mucositis around the 19th of May and this entry is being written on the 22nd, so for about 4 days now I have been occasionally throwing up this mucousy mucousy and foamy type vomit and tons of diarrhea. It was so gross. It was neon green/yellow in color so it actually stained my clothes if any got on it. Sorry for the graphic nature of this program, but I'm telling you the way it was. So the evening of Thursday May 22nd after a 7 hour day in the BMT clinic getting my blood out and then dripping in platelets, fluids and getting shots in the belly of 2 different meds. we went back to the apartment. I had, what we we have come to affectionately call as "episodes" a few times that day at the clinic. An episode consists of throwing up, or gagging or dry heaving mucous and most times it was all 3, and/or diarrhea attacks that at times I didn't even know were coming, and therefore were late catching (oh those times were fun). So at 8:00 pm....we hadn't been home but maybe 3 hours from the BMT clinic, when I had an "episode" and Mom put her hands on my forehead (oh that feels good when you're throwing up....my mom's cool hand) and she felt that I was warm. Kate took my temperature and anything over 100.5 is considered a fever in Bone Marrow Transplant,m World since you have no immune system. My temp was 100.7. Kate called the Clinic and told them what was going on and a doctor called back and long story short...... we packed my sorry ass up in the car and drove back to Moffitt and I was admitted as an IN-PATIENT. I was soooooooooo upset as I wanted to do this thing so badly on an out-patient basis. The WHOLE thing. I felt like I failed. I was in the hospital about 3 years ago for something totally unrelated, so I have horrible memories of being in a hospital. The hospital smell, the hard beds. the skinny plastic pillows, the food........just the whole thought of it makes me want to hurl and now here I am an inpatient and I wasn't even admitted to the Bone Marrow Transplant Unit as they were full so I was admitted to an "overflow" unit. Of course, every patient there has some kind of cancer, but only 3 of us on this particular unit were Bone Marrow Transplant patients. So May 22nd turned out to be a dark day for me and little did I know at the time, that I would be in the hospital for ONE WEEK. Stay tuned for details.
Thursday, June 19, 2008
I know I have mentioned the words "chemo brain" from time to time in my blogs here and there, but haven't really explained exactly what it is. Doctors and Scientists have studied this phenomenon, along with Psychiatrists and Psychologists. They all agree it is "real" as MRI's and Brain scans prove that there is decreased functioning, however no one can tell you exactly why or how it occurs. They know it has to do with receiving Chemotherapy but that's about it. Studies show that some people fully regain all their functioning when they are no longer taking chemo and others do not. Some people improve in some areas and others do not. This is why chemo brain is so difficult to describe.....even the pros can't describe it!! Chemo brain creates a real challenge for those of us who were blessed with the size of a guinea pigs memory to begin with. Then add in chemo brain and I'm just a flippin barrel of laughs on any given day. Chemo brain has affected me in a variety of ways and some days are better than others. I'd say across the board it makes me VERY forgetful. Not the "where are my keys?" forgetful, I'm talking about simple simple words. And the kicker? When I forget one of these simple words I will use more complicated words to try to get the person I'm talking to to know what I'm talking about. For instance......if I couldn't come up with the word "refrigerator" I would say "you know...that large machine in the kitchen where we put food in to keep it cold or to make things freeze"........oh yeah.....that''s happened!! It's amazing how many words just go away. I am so much fun to have a conversation with, it's like playing charades some days!! One day I literally forgot how to add. No kidding. Now I'm no Math Major like Lindsay, but I've managed all these years to get by and especially have no trouble balancing my checkbook. But I truly forgot how to add. The numbers just meant nothing......crazy huh? I've also said that chemo has made me a pathological liar. If you know me you know... I DO NOT LIE. Chemo brain makes me think something has happened or someone said something and it's totally not true. Don't get me wrong....it's not that I am hallucinating or anything like that, it's more like I'll think the doctor said this or that or I had a big lunch, or swear I did whatever, when in fact......the doctor did not say whatever I think they said......I refused the lunch I swore I ate etc etc......This symptom is a little more difficult to explain, as you can see I'm even having a hard time explaining it here. LOL Another gift from chemo brain is that I repeat myself because I FORGOT I said things. I'm talking about things that happened that SAME day! I am at the point and have been for awhile, that I find MYSELF annoying!! I would dread talking to me......LOL Thank goodness I have people in my life that can get past my chemo brain and know the "real" me is lurking in there somewhere. Hee Hee. Now please remember, life shattering chemo brain moments don't happen everyday. I can still hold an intelligent conversation 90% of the time (if you catch me on a good day......wink wink) Just wanted to share what Chemo brain is for me.
Wednesday, June 18, 2008
Just a quick note to invite you to look over the new photos I've posted. About a week before leaving for Tampa for the Transplant, I asked Van to come over and take some photos of me and the girls and the dogs......the "last photos" per se, before I got sickly looking and before I lost all of my hair. I knew that I would literally NEVER look that way again. I had let my hair grow long for awhile now, because I knew my hair would not grow as long as it is in these photos ever again. I don't think my hair has been this long since the 80's!! In many of the photos I got all "posey" like a model and I sure heard about it too, but as usual, didn't really give a SH*T about their razzing me! LOL.......the girls, me, Mom and Van had fun that day with lots of laughs all around. Enjoy the photos and soon I will be posting the new photos of myself. For future warning......do you watch "Deal or No Deal"? Well.....I'm lookin a whole lot like Howie Mandel these days!!!
Tuesday, June 17, 2008
The first week after the Transplant were May 16th through May 22nd. Let me explain though how you count days in Transplant World. On the days prior to the transplant itself and you are counting the days TO the transplant are counted as say.....Day MINUS 4 or 2 or 1. The day of Transplant is DAY ZERO and from then on the days are counted as Day PLUS 1 or Day PLUS 6 etc etc. So the days I'm referring to now will be ........May 16th (Day Plus 1) through May 22nd. My white blood cell count was at 3.21 (LOW) on the 16th and the next day it had plummeted to .50!! That's quite the fall in 24 hours, so it seems my blood cells are rapidly disappearing. Let's hope they "appear" as fast when the time comes!! Because of the rapid demise of the cells that means I am beginning to feel the effects of the chemo that took place on the 12th and 13th. In other words......this is beginning to suck. The whole purpose of the chemo though was to destroy my entire immune system. That means I have no cells to fight infection.....I have no cells that will transport oxygen throughout my body and I'll have no blood cells to clot my blood. This is what we want though so now my numbers are reflecting it's working! I am thirsty all the time but when I drink water, especially cold water, it makes me nauseous. And all I want to do is guzzle a cold bottle of water, but I can't. I WILL throw it up. So the only thing I can have are ice chips, or room temperature water, neither one being satisfying. During this week besides throwing up, diarrhea and the above mentioned fun I'm receiving all kinds of fluids when at the BMT clinic as the chemo has thrown my electrolytes into a frenzy. Into my central line I got: potassium, calcium phosphate, sodium chloride, and phosphorus. On the 20th my platelet number got so low that I started to get massive amounts of "little red dots" all over which indicate that my blood's not clotting and sort of bleeding out because it's so thin. On the 22nd I required a blood transfusion and also required a bag of platelets infused through my central line. Also throughout this week I was getting shots of "Zofran" in my belly which was to decrease my nauseousness. My blood pressure was also doing circus tricks along with my pulse and I was not sleeping too well either. At this time , I need to stand up and give KUDOS to my sister Kate and my Mom as all throughout this week I was on so many medications besides the ones for nausea.... like anti virals, anti fungals, antibiotics, anti bacterials, besides my slew of regular medications that they were having to set their alarms for at least 2 different times in the middle of the night to wake up and give me meds. You should see the form my sister made on the computer to keep track of which med and when......it looks like it was drafted by a NASA scientist, I kid you not! And if certain times weren't working or there would be a change in dose etc. she'd go back on the computer and bring it up to date. I am so suffering from chemo brain that I was lucky to be able to read it, much less understand it!! On Thursday the 22nd I started to run a fever and little did I know then that the REAL transplant fun was just beginning........Damn.....I ain't seen nothin yet.
Monday, June 16, 2008
Today is May 15, 2008, my actual Transplant Day. In the Bone Marrow Transplant World, they also call this my "New Birthday". It is a day when I am reborn. A day when I receive all new, what is really and truly a new life because life comes from our blood cells. Wow....pretty awesome when you think about it physiologically. I am feeling a bit punky from the chemo or the neupogen shots as I have a headache and some nausea and vomiting.......not off the chart, mind you, just some but it's pretty annoying. When I got to the BMT clinic today I went through the usual giving of the blood sacrifice :) and then went into a room that, just like on chemo days was mine all mine for the day and again was assigned my own nurse, Vicky who was with me all day long. She never left my room! Her job was to watch me like a hawk for any side effects of the transplant. They told me it's not so much the cells being transplanted that cause the problems, but the DMSO that they were preserved and frozen in that alot of people have a reaction to. I had absolutely no problems today during the transplant. No adverse reactions......yay! While I was in Room 18 with Vicky, I told Mom and Kate to go out to lunch or something as they also never left my side and since I was there for the duration of the procedure, I wanted them to get a break and get out of that clinic environment for a bit. They were gone for an hour or so and had some lunch and then we had my (surprise to me) "Birthday Party"!! I couldn't believe they came back with Bags full of presents and cards for me, to celebrate my new Birthday. Some of the gifts were "real" ones and others were jokes......I had the best time opening them and I've uploaded a couple new photos, one of which I'm wearing my Birthday "Princess Crown".....yep.....got one of those.......and I'm also wearing a pair of glasses with the "eyebrows" attached in preparation for when I lose my own eyebrows! In addition to the beautiful crown to wear and the above described beautiful eyebrows I also got a set of false eyelashes to wear.....again...in preparation for when I lose mine.......I got a poster to color that has a freaky "Super Hero" girl on it to remind me that I AM a Superhero! I also got 3 cards from my sis and 3 from my mom, all of which were a riot. We all laughed so hard when I was opening my presents and poor nurse Vicky......well, let's just say she's probably never met a funnier crew than us. She was also laughing hard!! It's a damn good thing we find each other so entertaining and amusing because we sure have laughed alot for going through such a life threatening/changing time, yet, ya know.......that's just the way we are and we're not gonna let a little Bone marrow transplant, change us or spoil our time together. Screw that.......we're here together to beat this thing and one way IS with humor AND each other. So take that Multiple Myeloma......you have some formidable foes with these "Glosson" girls on your hands! After 8 hours I got to go home with instructions to come back tomorrow around 10:00am. Will update again tomorrow.............
Wednesday, June 11, 2008
Today is May 14th and is called my "OFF" day. Basically that means they are giving my body a rest between receiving the 2 days of Chemotherapy and then the receiving back of my frozen little baby stem cells (awwwwwwwwwwww......aren't they cute?....Lordy I hope so :) ) But.....thanks to me, yeah ME....it was no "day off" at all. The day off did include going to the BMT clinic to check my bloodwork and examine me to see if I tolerated chemo well but it originally DID NOT include having an MRI on my head and neck until I did a Cirque de Soliel move in the shower the evening of the 13th! Can you believe that? I was really doing ok in the shower until I leaned my head back to shampoo my hair (that's NO PROBLEM now.....no hair...no shampoo.......hee hee) and down I went like a ton of bricks. And then......guess what? I stood up after the fall.....threw my head back again to wash my hair and BOOM....down again! Now, one would think, after falling in a tub TWICE, that one would learn a lesson....but ohhhhhh nooooooooooo......can you actually believe I did it one more time? Well the 3rd time was a charm because Mom and Kate heard me yell out that time.....they hadn't stayed IN the bathroom with me because I wasn't weak or anything yet and and we all thought that it was safe but after that night I was NEVER allowed to shower alone again!! We told my doctor what happened and she ordered an MRI of my spine and skull but all turned out well. Do I know how to liven things up or what? I can't believe that I really did it 3 times, so I'm going to blame that on Chemo Brain and let it go at that. Well, tomorrow I reap the benefits of those 3 apheresis days and get my new bone marrow stem cells....I'm excited....God I hope this treatment works and extends my life as I still have so much more left to do. I'm really positive and hopeful it will. More later.....Peace out!
Monday, June 2, 2008
Today is May 14th, the end of two full days of Chemotherapy. We arrived back in Tampa on Sunday May 12th (Happy Mother's Day) to settle into the apartment for the rest of my entire treatment until that elusive "discharge day" when I have been declared by the Powers that Be (my many Doctors, PA.s and Nurses......actually an entire team that also consists of Pharmacists, Dietitians and too many others to count!) The Chemo used is called High Dose Melphalan and was administered along with a few other drugs on a constant basis for the entire 2 days. Now, there are some things you just can't escape with Melphalan and they are Mucositis (no fun whatsoever), losing your hair and usually your eyelashes and eyebrows too, to also complete the pretty picture. There's also more fun stuff like nausea, vomiting, and a host of all other kinds of attractions that High Dose Chemotherapy brings. Now remember, I've been on chemo over a year now, but nothing like this kind of mega dose. My doses, although strong, was nothing like this, and besides my other chemo was oral, and this was the BIG GUN IV Stuff!! I had my own assigned nurse, Jess, an adorable, pretty, tall, blond nurse as my nurse for 2 solid days. I was her only patient!. Talking about 1 on 1 treatment!! I was her patient and that was it. They have to watch you so closely for side effects during the chemo process we were basically tied together for the entire time. We got along well and spent half the time laughing. All in all, receiving my chemo days went really well.......and then of course there's....THE OTHER SIDE :(