Remission!

What a great day!! I went in this morning to have labs and visit with Dr. Te, and prepared for possible week of chemo. But when he came in to talk to us, he had a little twinkle in his eye and said that the bone marrow and aspirate had come back clean. The chemo has done it's job, and I am officially in remission. Roger asked what kind of remission he would expect, and he said a few years, but we know that FCR(my chemo) is new, and the remissions can be more like 5 to 7 years. What a fantastic feeling this is. It feels like a new beginning, and a chance to move on from this limbo we have been living in. So the plan for now is just to draw labs every 3 months and probably another CT scan in 6 months to a year. I feel very blessed today. This experience has made me appreciate the things and people in my life more. It has been a chance to see and feel love from such supportive family and friends and it has made such a difference. Roger has been my knight in shining armor...protecting me, and taking care of me. So many of you have kept in close touch with your good thoughts and wishes, and I appreciate all the prayers on my behalf. Thank you all so much! I'll keep this blog open and with any updates or changes that show up on my check-ups.

I'm sure it was not smart for me to watch a few bone marrow biopies on youtube before going for mine, but the bone marrow biopsy and aspiration went fine. They gave me versed to put me out, though Roger says I whimpered a little during the aspiration anyway. Then apparently I talked to the nurses and everyone on my way out the door, talked to Roger all the way home, talked to my Mom on the phone, and I don't remember a thing. So, if I happened to embarrass myself by saying something inappropriate, I hope I will be forgiven.

I was less than productive yesterday, and slept most of the day away. My hip is a little sore today, but not too bad. Now comes some fun! Kyle's farewell is on Sunday so we will get to see family and friends, and have a great weekend.

My bone marrow biopsy was supposed to be yesterday, but after my lab draw, my white count was too low, and Dr. Te wanted me to wait until Thursday the 23rd to do it. Just when I thought I was mentally prepared, now I've had think about it longer. :) I went and got a copy of my labs from Monday the 20th and they were quite surprising. Every count, from white to red to neutrophils is lower than I have ever had them, and that is not good. If you were to just look at the numbers on the paper, I would think I would be in the hospital in a neutropenic room. I guess I should be feeling good that I am still walking around and haven't caught any infection. I really have felt pretty good. Tired and weak, but that is my norm. So, the biopsy tomorrow, then labs drawn early Monday followed by a visit with Dr. Te. At that time, he should have the preliminary results back from the biopsy. That will tell him if I need another round of chemo or not. If so, I am scheduled for Monday, Tues, and Wed of next week. But with my white count and neutrophil count so low, I don't know if I can do it. So just more waiting to see what will happen. Living in cancer limbo gets a little old. I am ready to start getting my life back and moving forward. Hopefully it will be soon.

Wow. This past round has really been rough. I've never had the nausea so bad and just feeling terrible. I kept diligently taking the Zofran and compazine, but it didn't seem to do much. I don't know why the difference, but I guess every round has gone a little different in a new way. Today, I am still nauseous, and light-headed. I had big plans to become productive today, but they are diminishing as my head swirls. I get labs drawn today so we'll see what is going on.

On a happier note, it is Mandy's birthday today and we got a great letter from her! She is doing so good, and she is just so happy. I couldn't ask for anything more.

Another round

After my labs were drawn yesterday, it was determined we could start another round. All my counts had bounced up just since
the lab draw the week before. So the doctor said we will complete this round and do a bone marrow biopsy on June 24th. My CT scan came back clean, so that is fantastic news. If the bone marrow comes back clean, I am done! So there may be light at the end of the tunnel in sight. So, I'm back today and tomorrow for more of the nasty chemo that is doing such a good job.

Another round done, phew! Everything has gone well this week. I finished yesterday, and last night started to feel it already. The heavy arms and nausea. But I'm glad to have another one behind me.

May 2, 2011

I'm back on track, yay! This morning I had my labs drawn and my white count is 3.4 and my ANC is 2.7 which is the important one now. If it goes below 1.5, I am considered neutropenic and I really don't want to go there. Last week it was 1.6. My red counts area all still below normal, but not low enough to stop treatment. I asked Dr. Te a few questions about that today. He says if both the white count and the ANC (absolute neutrophil count) are low, he will hold off treatment. The red counts are a different issue, and if they are too low, he would stop treatment too for transfusions.

So he is looking at a few different things to determine my course. The treatment went well today. No reaction at all, I even got some reading done. Coming home I am feeling a little loopy and wobbly, but that's from the other medications probably.

It sure is interesting each time I sit in that chemo room. First of all, I notice that I am always the youngest one. Today's average age had to be mid to late 60s. But it is comforting to sit with them all and hear their stories, and their attitudes, and how they cope. So many of them have been through so much, it is just hard to believe. It is also comforting to be in the company of others who are feeling what I'm feeling and going through the same course I am. And the chemo nurses are just awesome. So smart, and so caring. Anyway, I'm back there tomorrow and Wednesday.

Well, I should be reporting about my first day at chemo this week, but there has been a change in plans. I had my labs drawn this morning and went to visit with Dr. Te before treatment. The CT results were good. Most of the nodes have diminished in size. A few are still a little enlarged. He was pleased with that. But my labs from this morning showed counts that made him want to put off treatment for a week at least. The idea of a chemo cycle is to send the drugs in to kill the cancer cells. But along the way, they kill and damage white and red cells. That is why there are 25 days between treatments. To give time for the red and white count to bounce back up.I guess they didn't bounce back enough this time. My white count is only 1.7. He says if you do a treatment when it is too low, it does more damage to the marrow that it doesnt recover from. So for that reason, I guess I'm glad to wait. Just a little disappointing to be mentally prepared for it, then have to wait. Plus I've planned the spring and summer activities around the schedule I thought I would be on. Oh well, I guess flexibility should be expected.

There is a shot they can give to bring up the white count. I had one when I was in the hospital last month. I called the office to see if I should get one of those again. I'm waiting to hear back from them.

I am a pretty structured person who lives by lists and schedules. Not too much has been by the book for this adventure so far. So I need to be patient and just take things as they come.

April 21, 2010

It has been a precarious week. As of Wednesday night, I thought for sure I would be in the hospital with a fever on Thursday. I was feeling the same way I did the last time it happened. Aches and pains and fever. My temp was 101.0 (which is .5 higher than when I should call the doctor) when I took it at bedtime, but I just decided to go to bed and deal with it in the morning. It was down to 100.1 and has been coming down since. So for all of you that have always put me in your prayers, thank you. I know this was a great blessing.

I'm still not rid of the aches, but the fever has stayed down. This morning I had my CT scan. I just cant tell you how bad I hate the contrast they make you drink. One full cup every 20 minutes for 2 hours. I could just about throw up thinking about it. I'm sure the results of this test will be great compared to the last. I will find out from Dr. Te on Monday what they say.

I just can't believe how worn out I am! Just walking into and out of the hospital and I'm winded and shaky. Thank goodness Roger has been so good to me. I rarely do much more than dishes and laundry at home. I am so tired. And some days, like today, I get discouraged. I know there is a light at the end of the tunnel, and I will regain my strength and get some normalcy back. But I am tired of not feeling good. And a new round of chemo starts Monday, and I feel like I never quite bounced back from the last. I guess I am getting some venting done!! But I am truly grateful and humbled by those who continue to pray, and put my name on the prayer roll at the temple. I know without a doubt it does help me.

April 19, 2011

I have done pretty well the last few weeks. But starting yesterday I started getting some familiar aches and pains. I feel kind of flu-ish but haven't had a fever so I'm not worrying it. Just taking it easy. I have a CT scan on Thursday morning. Then 'm scheduled for chemo next Monday, Tuesday and Wednesday. I have been really run down. Little things are not like they used to be. I can't wait for the day to return when I can be full of energy and be productive.

April 09, 2011

It has been a good week. I have felt good, no nausea. Pretty tired though. Weird thing over the past 10 days or so I have been itching. All over. It can be a side effect of the chemo. Chemo is hard on the skin. Sometimes it has driven me crazy, but mostly it is just annoying. However, it is an easy thing to live with compared to the nausea and other stuff.

April 3, 2011

I tend to either disappear for a few days when I either don't feel good, or do feel good . This time I haven't felt so good. Like clockwork after day 3 of chemotherapy is over I started with the very tired, heavy armed feeling again. By Thursday the nausea set in. Friday and Saturday were nausea days too. I really was diligent in staying on both Zofran and Compazine, but it didn't seem to do much. Nausea stinks.

I had read somewhere that it is common for a woman to gain 7 pounds during chemotherapy. I wondered how this could be possible since you're throwing up and have d no appetite. During all 3 days of chemotherapy they pump you full of steroids and while you still feel good, you want to eat everything in sight. Then you get sick and it's tough for a few days keep anything down and nothing sounds good at all. Then after you feel better again you eat everything you had dreamed of eating before. It's quite a roller coaster. I've had funny cravings along the way. I love ice cold fruit cocktail cups, strawberry milk, and chocolate milk. Do I sound like a 2 year old?


Anyway, I am feeling better again, glad to get out of that nasty nausea hole. I get my labs drawn tomorrow and hopefully all my counts will be good and no worries.

March 29, 2011

Day 2 of Cycle 2 done. Yesterday I went in for the whole shebang. They went through the notes on my last Rituxan experience, and this time pre-medicated me for everything that had been bad the first time. And it worked! I got through it fine, no embarrassing myself or anything like that. Today went well too. I have taken all the coaching tips and just decided to stay on the nausea medications for 10 days constantly and hopefully not have problems with it. Dr. Te said he is liking how I am responding to the treatment and wants me to go in for a CT scan on April 21st to see how the nodes are. I can tell you that they have shrunk, I can feel the size of them. But so far, so good. I continually am amazed at sweet family and friends and their care and concern. I love you all. Thanks for what you do for me.

Saturday March 26, 2011

It seems as though I have done a lot of complaining here, so I thought I'd better also write the good. After the hospital stay and the powerful antibiotics, Thursday I felt better than I have for a long time. Pain free, nausea free. It has felt WONDERFUL the last few days. I appreciate every time that I realize I don't have a headache, and feeling my face and it being not sweaty and the right temperature, and no pain! Maybe that's one of the many lessons I am supposed to learn through this trial. Be grateful for the little things, that are so easily taken for granted. I am learning! And appreciating. I plan to enjoy tomorrow with Kreigh and Kris and Atreyu and Roger, and make the most of it.

Then chemo starts again on Monday. I'm a little nervous because I will be getting all three drugs on Monday and will be hoping that the Rituxan doesn't have the same effect it did last time. They tell me it should go much better because my body has now been introduced to it. So I'm crossing my fingers.

I realize I haven't passed on the good news too, that it looks like I will be keeping my hair. They told me I would know in 3 weeks if I would lose it, and so far nothing. So Yay!

Have a great Sunday.

Tuesday, March 21, 2011

I never got feeling better last week. So Sunday I decided to take no Tylenol or lortab and see what my fever really was. It was 100.6, so I finally called Dr. Te's answering service. He was not on call, so Dr. Anwar called me back. He listened to what had been going on and then told me he wanted to admit me to the hospital for IV antibiotics. So Sunday morning, I headed to the hospital. I spent 48 hours there getting antibiotics and watching my fever. I did not feel well. Ironically, I was now a patient on the floor I had worked on when we moved to St. George, so I was treated by a few familiar faces. But let me tell you, I hated being a patient.

After 7 doses of the antibiotic, my fever seemed to be in control, so I was discharged this morning with prescription Levaquin for the next week. I am scheduled to have chemo start next Monday, and will have labs drawn that morning to make sure it is ok. So it has been a rough, discouraging week. I feel so guilty getting absolutely nothing productive done, but I just don't have it in me. Roger has been so good to be with me and make sure I have what I need. I am definitely tired of feeling this way. Sometimes I have to remind my self of the big picture and that it is all headed to me feeling good again.

Friday March18, 2011

Wednesday I started getting sick. I was up literally all night trying to get comfortable, but I just hurt in every joint. Finally after some lortab i got some relief. Through Thursday my temperature would flirt closely with 100.5. That is the point where the doctor wants to hear about it. But I never went over, so never called. I felt ill all day yesterday and lortab would finally make me feel better. I slept well, and today woke up feeling still achy, but better than the days before. So I don't know if I've been sick, or it is chemo. I feel weird things now, and just never know why. Everyday I take two antibiotics which is common while on chemo. So I don't know what can get through them. I worry about going out in crowds, yet I have to live. But I need to be diligent in handwashing, and the places I put myself. I haven't come to the point of wearing a mask in public, that just would seem to weird. But I'll never say never, since this will be a long 6 months of not knowing what is coming. I am hoping for a good week this next week, my last before the next chemo treatments.

March 14, 2011

Another week down. A pretty good one. As far as nausea goes, I only felt it on two days, and it wasn't too bad. The thing that has been tough has been the fatigue. With the chemo regimen I am on the period between day 10 and 14 of the 28 day cycle is called "Nadir". The definition of nadir is the lowest point. This refers to the white and red counts and platelets. So they get to their lowest point during this period of time and then hopefully start to build up.

My labs drawn last Monday, the 7th, showed my platelets were in normal range, but within one week, my white count was down to 3.4! Crazy stuff this chemo. So now it is below normal now, when it has been high for so long. My red couts have dropped too unfortunately. I am anemic and low in my hematocrit, red count, and hemoglobin. So that is why I'm worn out. I get my labs drawn again today, we'll see what has changed in a week.

So, it was a week of not doing much and just resting. I am so blessed to not have to be working right now. I can just take the time I need to rest.

On another note, we have been so saddened by the tragedy in Japan. We feel a closer bond to the country and people now, and are just so saddened for what they are going through right now. We don't know if Kyle's mission will be altered at all. But I'm sure it will be affected in many ways as the country will be rebuilding. So maybe more humanitarian service will be needed by the missionaries. And as these people are left with nothing, their hearts may be ready to hear about the gospel and the comfort it brings and to be ready to hear about our Savior. It will be interesting.

March 8, 2011

What a week. Such low down lows, but also a big high with Kyle's mission call. Yay for Japan! It was a long miserable weekend of not feeling good. My parents came down to visit and take care of me. Even at 46 it feels good to have your Mommy and Daddy around when you are sick. And spoiled us with yummy cooking. It is hard to describe Friday and Saturday especially. I had no energy, or desire to do anything at all. That included talking, reading, watching TV, anything. It felt like my arms and legs were weighed down and everything was an effort. The nausea lasted through Sunday, but lessened a little each day.

So here I am on Tuesday morning with a much better outlook and disposition. I admit I was very discouraged wondering if the next three weeks would feel that way. But as of today, it is not true. I feel pretty good. No nausea and I even made it to Walmart. Stocking up for the weird cravings I was having. Cold juice, cold fruit cocktail, smoothies, and chocolate milk. And for those who know me, I haven't even wanted a Diet Coke for a week. I know. Amazing.

I went from going to bed about 8 every night because I was so exhausted, to now not being able to sleep. I don't know what that is all about but this morning at 4:30 a.m. I was filing away our 2010 bills and such.

So, today is a good day, and I am optimistic.

Saturday, March 5, 2011

It has been a rough couple of days. After the fatigue has come the nausea and not keeping things down. I am trying to learn about my medications and what will work to get me through. I just really haven't felt good. Sleep is my friend. More later.

Day 4 Cycle 1

I got through the 4th chemo treatment fine. But after getting home, it started to hit. Just a draining, worn out feeling that was beyond what I'd felt so far. My arms felt like they were 50 pounds each and my eyes were tired. So no reading, or TV watching, just basically laying around as a lump listening to things. I am up this morning feeling a little better, but not ready to run a race. But I am definitely going to be storing up some energy for cheering and shouting as Kyle open's his mission call tonight! It's hard to believe that 2 years of his future, and something that will change his life forever, is sitting in this pretty white envelope. I am very excited!!

Day 3 Cycle 1

Another good day. The chemo went well, again no side effects. The infusion nurse told me probably a day or two before I would feel them. Not sure what they will be for me as it seems everyone is different. It is interesting to sit in the room with others and listen to the conversations. My first two friends today are both in the 70s and both have acute leukemia. I love their sense of humor and look on life. The nurses really are spitfires right back at the patients, and it is the huggingest group of people ever! The ladies that came in later were talking about their wigs and hair loss. I still am hopeful that it will not be a worry for me.

Day 2 Cycle 1

What a difference today's chemo was that yesterday. The Rituxan I had yesterday is a smart drug that can actually search out cancer cells and target them to be killed. It's side effects hit pretty hard and fast, so it was a tough day yesterday. Today I had Cyclophosphamide and Fludarabine which are the chemo drugs that just kill fast growing cells. That means cancer cells, but also attacks the other fast growing cells in your body. Namely the gastrointestinal tract, skin, and hair. They think I will not lose all my hair, but that it might thin out. I am being optimistic and not wig shopping. The nurses are great, and I'm already making some chemo friends that have been there both days. They are old and love to talk! I'm still waiting to see someone under the age of 70 walk in. But today was a good day.

Day One, Cycle One

Wow. It was kind of a tough day today. They started out today just giving me one of the drugs that doesn't have the lingering side effects, but has the immediate ones. So I kept the nurses busy between chills, aches which they counteracted with one medicine. Then the afternoon was fever, sweating, killer headache and ta-da......Throwing up in a room full of people numerous times. But everyone just looked at me like...been there done that, hang in there.....Lots of people in there wanting to share experiences. Good thing Roger was there to keep up the conversations. But I got through it. Came home and took a shower and felt better. Even my headache is gone now. I really appreciated the nurse I had. She was patient, and taught me, and was understanding and trying her best to find things to make it easier.

Tomorrow is another day. Two different chemo drugs tomorrow, but shouldn't be nearly as bad they tell me. And it should only be a few hours too. Today was very long. But one day down!!!

Portacath

For those just joining in on this blog, I was diagnosed with Chronic Lymphocytic Leukemia about a year and a half ago. After watching it over that time, it has become time to start to treat it.

I feel weird doing all of this. I have always been so healthy and it is all new to me. I'm much more comfortable treating patients, not being one. Yesterday I had the surgery to put in the portacath. It is a nifty port they insert under the skin on your chest. It makes access for chemo much easier and blood draws can be made from it too. It requires no special wrapping or bandaging so I can do normal things like swim and shower without worrying. I am still pretty sore from it today. I have very tender skin and just from the tape of the surgery drape, I turned all red but it is better today.

I'm trying to enjoy the last two days of freedom, but I've had a headache since the procedure and just can't get rid of it. Nausea too. Better get used to that!

The chemo will be given at Dr. Te's clinic Mon-Thurs next week for round one. I sure hope he has wi-fi. Day one will be the Rituxan, which he has assured me I will have a reaction to. Everyone does. But they premedicate, and run it slowly to keep it in control. I'll let you know how it goes Monday night (I hope).

Chemo starts February 28th

Once they decide to get you started on your chemo regimen, they move fast! I met with Dr. Te today. We discussed the results of my CT scan. Most of my affected nodes are in my neck, head and jaw. They are numerous and some have grown, but not dramatically from the last scan. I do have some new inguinal nodes that were not there on the last scan. The rest of the axillary and abdominal ones have basically stayed the same. My blood tests showed another big increase in my white blood count, and in my absolute lymphocyte count. Along with the fatigue, night sweats, and fever, Dr. Te just said lets get treatment started.

So tomorrow (Friday the 25th), they will surgically put in the portacath in my chest which the chemo will be given through. From everyone I've talked to and what I've read, this is a great option so there won't be so many holes in my arms, and my veins won't take a beating. Then Monday the chemo will start. I will go Monday, Tuesday, Wednesday, and Thursday for the first cycle. And then I will have 24 days off. The rest of the cycles will only be on Monday, Tuesday and Wednesday. Probably 6 months worth.

This chemo has shown great remission rates lasting around 7 years. It is a blessing to have such great advances in medicine that will continue even as I go through my journey. Dr. Te says that he will keep me on antibiotics for the 6 months to prevent shingles which is a common complication. They can control the miserableness of the old days of chemo with drugs to help with nausea and pain. So I am encouraged and hope to be as well as possible during the cycle.

I am nervous, but I am also ready for this. It is hard to just watch and wait and wonder. I have been so tired, and drained and just not wanting to do much. So I know this will be a tough road, but I look forward to coming out the other side and hopefully feeling myself again. I am tired of being tired.

Thanks for reading, and caring. I will hopefully post often and can let out a little venting here.

Monday February 14, 2011

Hi everyone. New news after this past visit with Dr. Te. I have felt things changing over the past 3 months and knew things have been going on, just from the way I have felt. The dizziness rarely goes away and can be annoying. I have been so much more fatigued as well. Things that didn't tire me out a few months ago, are now tiring me. When I have to sit in my car and rest between Costco and Walmart, I know something is up. I have also had the "night sweats" that come along with cancer sometimes. Poor Roger. I have tried to deal with this symptom without disrupting his life too much. I put down extra linens on my side of the bed at bedtime, and shed them as the night goes on. That gets quite bothersome and not very peaceful. Also I have started having random fevers that are not associated with any sickness.

So as Roger and I met with Dr. Te and his nurse practitioner, Kay, I let them know the things that had been changing. I also had my latest labs drawn and had the results. My white count is up from last time, my lymphocytes are up, and my neutrophils, which have always been in the normal range, are now high and out of the normal range. That's a new one, I will have to find out what it means.

So after taking the whole picture into account, Dr. Te said it's time to start treatment. He wants to get another CT scan and see if my internal nodes have changed. The ones I can feel on my neck, head, clavicle, armpit, and jaw, are not huge, but they have grown. I know because I tend to feel them every day hoping they are gone:) Then he wants to get a bone marrow biopsy too to see how involved the bone marrow is. The nurse explained to to me like this: There are cancerous white cells that I produce. These are created in the bone marrow then go on their merry way. Instead of fighting off germs and then dying a normal death like a normal white blood cell would do, they don't fight anything, then don't die. So they are left to just float around and do no good. They can either stay in the bloodstream, gather in nodes, or push out the good red blood cells from the marrow. Or they can do all three. It is different in everyone's case. We know it is in my blood from my blood tests, we know I have some amount in nodes because we can feel them. So once he finds out how much, if any is in the bone marrow, he will have a baseline to start treatment from. And he will know how many cycles of chemo can be expected to get rid of it. (Usually 6).

So it looks like I will probably be making more use of this post for a while and will hopefully keep everyone updated. My CT is on February 21st and I meet with Dr. Te on the 24th. I am unclear if this is the day of my bone marrow biopsy, but I think it will be. So as soon as I know more, I will pass it one. Thanks everyone for your love and prayers, I do feel them.

I wrote Mandy a letter she should be getting tomorrow. And Roger talked to her mission president this morning just to let him know she might need someone to talk to. President Christiansen says he and Mandy are close and that he will take care of her. Such good news to hear that she will be in good hands.