COAP- Cycle 1

I have now had both infusions of my chemo, but I am still taking my prednisone until day 14, or 15 since I started a day late.

When I got home from my first infusion, on Valentine's, I just felt kind of drugged...high...kind of out of it.  It was a strange feeling to say the least.  That night, for some reason, I stayed up doing random searches on the computer.  I think I was trying to plan the wedding I still want to have. :) (I blame this on Sara for making me look at bridesmaid dresses.)  I also discovered that the girls Valentine's bouquet had both of their birth month flowers (not on purpose), so then I had to find out what the husband's and mine looked like when combined with the girls.  Just random, strange stuff...I think those drugs really gave me some kind of high.

For the next few days, I continued to have a kind of lightheaded, off-balance sort of feeling.  It is kind of hard to explain.  I took my temperature, since I had been having fevers previously, but they stopped.  Actually my temperature was low..like 96-97, but I felt fine.  The night sweats pretty much stopped also.  I still sweat, or maybe drain, at night, but not bad.  I am not waking up soaked, and the sheets don't really get wet at all. 

The large lump that I had under my underarm started going down right away, I think.  It is almost non-existent now, which I think is awesome considering it was the size of a walnut.  The doctor said the lump, or possibly multiple lumps, were blocking my lymphatic drainage because I was having strange swelling, or retention, on my left side.  As the lump has disappeared, so has this strange swelling. Yay!  Also, my rash, which the doctor doesn't believe is from my cancer, but I always get with my cancer, is gone.  My skin is nice and smooth again!

I was finally starting to feel right in the head again, then it was Thursday again, and time for another chemo. The second infusion didn't seem to make me as crazy.  I still felt pretty normal.  At least, until last night. At about 4:30, I smelt something that made me crave Chinese food.  I came downstairs and googled recipes for fried rice and teriyaki sauce and started cooking.  I was finished making, and even eating a little after 6, which is really strange for me.  I didn't get distracted...I was very focused on making that food.  And, it was delicious..at least it was exactly what I wanted. Yum!  I think the girls were a bit confused because we don't normally eat that early, but...

I am still trying to eat good, but it is harder.  Maybe it is the steroids, or whatever else they give me, but sometimes I just crave food and have to eat then. I guess I need to stock up on healthier snacks again.  I seem to be losing a little bit more weight, possibly because of the cancer or the treatment.  It is hard to tell you when I lost it because my scale at home hasn't been working, but when they weighed me on Thursday I was down to 138.  (Before diet I was weighing 170-175 and with diet I had gotten down to about 145.)

Thank you for your continued support and prayers. 

Results of 8/9 scan

I wish I had good news to share with you...but I don't.  The cancer is still unresponsive to treatment, and still seems to be growing.  The doctor called me yesterday afternoon and let me know the results and her suggested next plan of action.  She suggested COAP, which is a combination therapy of cyclophosphamide, vincristine, arabinosylcytosine, and prednisone.  She said she had already discussed it with my local oncologist.  I am going to try to talk to him today to find out a little more information and see when he is planning on beginning treatment because I have an appointment with him on Thursday and want to know more before beginning.

If you pray...please continue your prayers for my family and I.  They are very much appreciated.

Upcoming PET scan

Please pray for me and my upcoming PET scan.  I fly to LA for the scan early Thursday morning (August 9th).  I will get to go over the results with my doctor that afternoon.

I am feeling really anxious and to be honest, a little emotional.  I know that it is in God's hands either way, but it is hard to not have anxiety over it.

So please pray for me....for healing and to not be anxious. 

Doctor's Appointment

I had an appointment with my LV oncologist today.  He spent quite a bit of time talking to me, explaining things, and trying to answer my questions.  He also went over my PET scan results from the 14th.  He didn't have the images, which I really wanted to see, but he tried to explain the written findings.

Questions and paraphrased answers

Are we sure that we are treating the right cancer?
We trust the findings of the pathologist.  They are the ones that determine the biopsy results.  All of the chemos that you have had this time Gemzar/Navelbine and the ICE treat a wide variety of cancers.  We have basically been dropping bombs on you...the new treatment (Adcetris) is more targeted.

Why haven't the chemos been working?  Why does my lymphoma look different this time? (Not sure if he exactly answered my second question but the answers related to each other.)
I can't tell you for sure why they aren't working.  But a few cells probably survived the ABVD from your first time with cancer.  Because they survived this effective chemo...they became stronger.  When they came out of lying around dormant they starting growing the new lymphoma.  It is stronger and more resistant to treatment.


What about treatment?
Brentuximab (Adcetris) was recently approved...I think just last year.  I haven't had to give it to any of my patients because they have had results with their chemo and Hodgkin's isn't that common....and usually ABVD works for people the first time.  It is a drug of the future.  It targets the cancer cells specifically.  The antibody that is attracted and attaches to the cancer cell is bonded with a chemo so the chemo goes right into the face of the cancer instead of floating around your whole body killing cancer cells along with good cells.  When a new drug comes out it starts out being used for people with few other options and gradually gets used earlier and earlier in treatment.  I had to talk with the head of your insurance because they weren't going to approve it...it was only supposed to be approved if you had failed remission after the stem cell transplant.  I told the guy that he had a chance to make a difference in your life and he approved it.  The goal is to get the cancer to respond to the treatment and then still send you on for the high dose chemo and transplant.  We are going to give you two treatments and then send you back for another scan.

What about the side effects? PML?
The side effects are like most chemos...lower blood counts, nausea, tiredness, numbness in the hands or feet.  There is nothing we can do for you to prevent or prepare for PML but it is a very rare side effect.   And if it happens it would mean I'm dead.  Well I wouldn't have said it quite like that.  I'm not sure if there is a treatment for PML.

What about my port?  If I'm not able to use it...I want it taken out.
I think that we can use it.  I would like to have them access it today for your treatment if you are ok with it.  Since your arm is no longer swollen it wouldn't appear that you still have a clot.  I think that we should use it.  Sometimes cancer patients blood gets thicker and is more likely to clot.  We are going to keep you on the Lovenox shots rather than Coumadin because it is easier to regulate for someone like you...going through treatment ...and if your counts get low and you need to stop it...you can stop it immediately whereas Coumadin is still in your system for a few days.

The PET results
"new enlarged gastrohepatic, left paraortic and aortocaval lymph nodes, as well as mild uptake in a new left sub pectoralis node, as detailed above, suggestive of progression of malignant disease."  This is all new growth since the PET scan from April 24th.


After speaking with the doctor I decided to go ahead with the treatment they had planned for me to have.  They accessed my port fine and I received my premeds (anti-nausea and Benadryl) and my first dose of Adcetris.  The whole infusion with premeds and Adcetris took about an hour...not very long at all.  I am scheduled for my second treatment on July 17th.

New Plan???

So....I didn't get the news I was hoping for.  It appears that there has either been no change in the cancer or that it is still growing...either way, it's not good.  The UCLA doc said that our next option, what she would suggest, is starting the drug Adcetris.  It is a new drug, just approved last year for the treatment of Hodgkin's.  It isn't chemo; it is an antibody-drug conjugate.  It sounds promising...I guess...but I would like to do a little more research on it.

It is just so frustrating!!! I don't understand how this cancer isn't dead...I don't feel bad at all.  I feel fine...why is it still growing??  Neither the cancer nor the chemotherapy have made me feel very bad.  I still feel, for the most part, healthy and strong.  What is going on? 

Part of me thinks that God is putting me through some test to see how strong my faith is.  This part of me wants to stop treatment and just give it to God.  I know that He alone has the power to cure me.  Maybe He wants me to show that He can perform miracles where no one or nothing else can receive the credit.  I don't want you to think that this means I am giving up the fight...that I don't want to live...because I'm not and I do!!  I just feel like I have already tried the...medicine way...maybe it is time to try something else.  Or maybe God wants me to use this new drug.  Maybe this is part of His plan.  I am a little confused right now.  I don't want to just keep going along with what the doctors say just because they say it...Please pray for me to receive God's guidance.

What's Next?

I had another ICE chemo the last weekend in May. It went fine, and I did fine with it.

 I am headed to LA again on June 14th.  I will be having a PET scan that will hopefully show that this cancer is dead!  After my doctor gets the results she will go over what the plan of action is going to be.  If my scan is good then I could be going for the high dose chemo and transplant as early as the following week. 

Although part of me really doesn't want to do it...I'm kind of dreading it...the other part of me can't wait to get it over with so I can get on with my life. 

Please pray that the results of the PET scan are good and that I can go forward with the next phase of my treatment.

Going Bald

Since my hair had been making a mess all over the house I asked my husband to just shave what was left off.  He wanted to make sure I really wanted to and that I wasn't just doing it to be crazy. :)  So on May 19th or 20th, we did it.  I wasn't sure how I would feel....but my sweet husband encouraged me and made me still feel attractive.  He said, "Just look at yourself...it doesn't look bad at all...I kind of like it."  And I looked in the mirror...and it wasn't that bad.  My head actually isn't a bad shape but it sure is white. :)  My husband was like, "Dang your head is white."  But I have always, since I was a born, had hair on my head...of course it is white. I was kind of nervous on how the girls would react to it so I went down with a scarf on my head.  My oldest wanted to know why I had that on my head so I told her that the rest of my hair was gone...Mama doesn't have hair anymore.  She of course wanted to see...so I took of my scarf and showed her my head and told her, "Feel it, it feels funny".  So, she rubbed my head and laughed, then the youngest followed her big sister and did the same.  They handled it so much better than I could have hoped for. 

I got some hats and scarves to cover my head, but after I had been bald for a few days, I just started leaving the coverings off at home.  I feel much more comfortable without something on my head.  Of course I put something on my head when I go out...and now I can't really walk around without people knowing something is wrong.  When I had my hair still, no one could tell I was sick...without it...there is no denying it.  I tried on my wig...and it just looked wrong...and the girls didn't like it.  The oldest said, "What's that hair on you?" :)  I recently had the bangs trimmed which helped a lot.  It looks better and more natural now, but...it just isn't my hair.  Maybe I am just not a wig person...

My husband said I should get a tattoo on my head and then when my hair grows back in...no one will even know it is there. I think that would be entirely too painful...and I really wouldn't want to spend money on a tattoo that would be covered up with my hair...that no one, not even I would be able to see. ;)

I must say there are some nice things about going bald...  Showers are much faster and I don't have to spend time blow-drying my hair.  I am much cooler outside in this summer heat.  I can stand in a wind and there isn't any annoying hair blowing in my face.  And the rest of my body too...my legs stay smooth for days after shaving whereas before it was only hours.  I only shave my underarms maybe once a week instead of daily.  Of course I would rather not have cancer, be going through chemo, and have lost my hair...but I might as well enjoy the benefits while I can.

The two top pictures are right before my husband shaved my head. (I should have put some makeup on..kind of scary picture.)  And the bottom is my glamour bald shot. :) It is weird but these pictures capture how I felt...I felt more sick looking balding than bald. 

Hair Loss....Boo! :(

Although I can't say I wasn't warned, I can't say that I was expecting it either....bye bye hair.

Sunday, May 6th, I got my hair cut in short chin length bob, with a stacked back.  It looked really cute.  I wanted to get something shorter, not only to be easier to manage, but also because I knew there was the possibility that my hair would be falling out soon.  I had always heard that hair loss was a little easier with shorter hair...it is....I'm positive.

My hair started coming out Thursday, May 10th.  There was hair constantly coming out...strands coming out every time I ran my fingers through it.  The shower was even worse....handfuls of hair came out.  The bathroom trashcan looked like it had a dead hamster in it after every shower.  The hair loss became more and more noticeable.  There is hair all over my house...on my pillow, all over my bathroom, on the recliner, all over the back of my shirt, in my food...very annoying.  I can now see why people just go ahead and shave their heads.  By Mother's Day, you could clearly see my scalp.  I wore a baseball cap on our trip to the Secret Garden.  I would definately feel uncomfortable being seen in public without something covering my head now.  I can pretty much forget about it until I look in the mirror....I told my Mom that I look like Smeagol from the Lord of the Rings.  Now that I have a few options for head coverings, and more on the way since we ordered some today, I am going to have my husband just shave my head.  I know it will be hard to see the last of my hair gone, but the hair all over is really getting on my nerves. 

I have two books that I got for the girls that talk about mom's losing their hair.  We have read them and talked to my oldest about it.  I think she still has questions and she seems more comfortable asking them when we read one of the books.  I know that it will be strange for all of us, but it is just hair....it will grow back.  I know I will be telling myself this quite a bit over the coming weeks or months.  Hopefully it is a good sign....that my cancer will finally be killed...for good this time!!!

Ice Effects

Our computer hasn't been working so I'm a little behind...let me try to catch up.

Monday, May 7th, I went to the lab for blood tests, both a CBC and INR test at about noon.  (INR is to test how fast my blood is clotting.)  My doctor from the the Coumadin Clinic (Blood thinner medicine) called first.  She let me know that my INR level was low so she wanted me to start back on the Lovenox shots to lower my risk of clotting.  I still had some shots at home, so I had my husband give me a shot before he left for work.  Then soon after, my oncologist called to let me know that my platelets were low and I needed to go to the ER for a platelet transfusion.  I had to yell down for my husband to wait so he could drop me off at the ER on his way to work.  We left at about 3:30pm.  I didn't think it would take long; thought I would be home for dinner, so I rushed out the door and told the girls I would see them soon.

At the ER I was actually taken back fairly quickly, but once back there I waited quite a while.  There was a tech and even a PA that stopped in to see how I was doing and let me know what was going on.  However, I was waiting for a nurse to come in and draw blood etc...get the ball rolling.  My blood wasn't drawn until after 6pm and they didn't start giving me the platelets until around 8pm.  Then at about 10pm they were getting ready to release me and the PA came in and said they were going to admit me instead.  He said that there had been a big drop in some of my counts between the noon and 6pm tests.  He said that he was afraid there might be some internal bleeding, maybe in the GI tract.  He also told me he had only seen numbers drop like that in someone that had blown up.  (Yes he actually said that.)  So...I found out I was going to have to stay, when I had been so excited to get to leave. 

Once I was admitted, I began prepping for a scope of my GI tract.  The prep included drinking a gallon of Go Lightly, (The name shows that someone had a sense of humor.) and many trips to the bathroom all night long.  The next morning, after meeting the entire staff of the hospital (almost anyway), I also received a red blood transfusion and was told I did the GI prep for nothing, they didn't want to scope after all.  I could tell that the doctors were not happy with my blood counts but I kept telling everyone I saw that I felt fine and I was ready to go home.  Finally, they decided to release me and I arrived home about 7pm; 24 hours later than expected. 

Transplant: Postponed Until Further Notice

My husband and I flew into LA the evening of April 22 and got to our hotel to settle in for the PET scan and stem cell harvest the next day. 

The PET scan went smoothly...then I was off to be harvested.  I got to the hemapheresis unit at about 12:30 and by 1pm, they had me hooked up.  They put in two IVs, one took the blood out and the other brought the blood (minus my stem cells) back in.  I just had to sit there, relatively still for about 3 hours while my blood went through this machine that separated out my stem cells.  When it was over they took out the IVs and taped on some ice packs.  They had me verify my name etc. on a bag of what looked like watery blood, which I later found out was my stem cells.  We were told they probably wouldn't have the count, to know if I had to harvest again, until the next day.  

The next morning my transplant coordinator called to let us know that harvesting was done.  They collected more than enough in one day!  They needed 2 million and I gave them over 5 million.  I was glad I didn't have to sit there again...mainly just because it was boring and I got tired of not getting to move.  The coordinator let me know that a doctor, not my normal UCLA doc because she was on vacation, wanted to meet with me to go over the PET scan results.  The meeting was going to happen at 12:30, and we didn't have our flight out until the next day so we decided we would go to the beach after speaking with the doctor.  Then...

At the doctor's office the doctor bluntly explained that the scan showed new growth...Ugh!  He said he felt bad meeting me that way but...he wanted me to get a round of ICE chemo right away.  He asked why my doctors had been giving me the Gemzar/Navelbine chemo and called it an "old lady" chemo.  Well,....I don't know why.  I just remember hearing something about them preferring to use that over another round with ABVD(my first chemo combination).  I think mainly because ABVD can be hard on your heart.  So...I got checked into the room and they put me on IV hydration. I assumed they would try to get started early the next day, but I didn't get my PICC line until almost noon and didn't get my first chemo, Etoposide, until 8pm.  I don't really like waiting around.  Then the next day they tell me that I will be checking out the following day.  To which we respond, "How?  I've only had 1 day of chemo and I still need two more."  That days chemo wasn't scheduled to begin until 8pm.  So they figured things out and started my chemo early. I received 1 hour infusions of Etoposide and Carboplatin and then got started on my 24 hour infusion of Ifosfamide.  The Ifosfamide one kind of scared me because it came in a glass bottle instead of the regular IV bags and it was the one with the side effects to watch for...but I didn't have any bad side effects. My infusion of Ifosfamide was set to be finished at about 5pm so my nurse ran my last infusion of Etoposide along with it, so they would finish close to the same time.  Then I was able to be discharged and go back to the hotel with my husband.  My main instruction was to drink a lot of water.  I did drink almost a gallon of water in a 24 hour period.  Our flight home wasn't until the following evening so...

The next day, we went to the beach.  We rode a bus down to the Santa Monica Pier, had lunch, and a nice little walk on the beach.  The water was freezing!  It was a lot of fun...and of course we had to get presents for the girls! Then we were off on a bus back to the hotel to pick up our luggage and then having to rush to make it to the shuttle back to the airport.  We made it...and we were so happy to be home!  We missed the girls so much! 

I met with my new LV doctor today.  Although he isn't sure...he thinks that I will be doing another treatment with ICE before I get another PET scan.  Then, hopefully the transplant will be back on track.  Die Cancer Die!!!

Getting Closer....

I had a blood test on Thursday and my INR was 2.6 so I got to stop taking the Lovenox shots!! Yay!  Now I am only taking the Neupogen.  Based on my blood test, the Neupogen is doing its job and I should be more than ready for the stem cell collection.  They actually said I could forgo the blood test on Monday and begin stem cell harvest on Monday after my PET scan.  I am hoping that they will get enough stem cells in one day but at least in only two.

Since my last chemo I hadn't been feeling as good.  I was a little more...just sickly feeling.  However, since I got to stop taking the Lovenox I have felt better.  I have no idea if there is really a connection but...at least I feel better know.  There is some bone pain and stiffness due to the Neupogen, but not too bad.

Thursday, my parents got here!  My dad is just staying a few days but he drove my mom up here so that she can stay and help us for quite a while probably.  She will be here taking care of the girls while I am in the hospital and then come help me in LA when I get out of the hospital.  At that time, my mother in law will come and help take of the girls.  I am so thankful that they are both willing and able to come help us out.  Now that the parents are here....it is getting more real...it is getting close.  Yikes!

Last chemo...

Well, today was the last chemo of the Gemzar and Navelbine that I will receive.  I never really thought that it would be bittersweet to end chemo but it really was.  I was hoping that my INR level would be high enough so that I could stop the Lovenox shots, but unfortunately it wasn't.  So, since I start my Neupogen injections tomorrow and still have to take my Lovenox, I will be getting 4 shots a day, 2 of each.  And my poor husband has to give them all to me since I'm a chicken.  :)  My stomach is running out of places to poke so he might have to use my thighs and upper arms.  I am getting my INR tested again on Thursday...please let it be high enough!! 
Yesterday my husband and I flew to LA to meet with the doctor and transplant coordinator.  It was a very long day.  We flew out at 8:30am and got to UCLA earlier than needed.  We just sat around waiting for the coordinator to meet with us.  Before she came over to meet with us she called and asked me if I would be able to squeeze in a PET scan while I was there.  I knew that I wouldn't have time with our return flight being at 5:30 so I called the airline to see how much they would charge to switch to a later flight.  When they said, "No charge" I went ahead and changed our flights to 7:45.  Later, after we had been talking with her for awhile we found out that I wouldn't be able to get the PET scan anyway because one of their machines was down...we changed our tickets for nothing.  I also found out that they won't be able to use my port for my high dose chemo/SCT.  They need something called a double lumen so I will have to have something temporary inserted for my stay there.  So that means....I didn't need this port! The Gemzar/Navelbine could have just gone in an IV, it gave me another scar and it most likely caused my blood clot...and I didn't even need it... :( Oh well...it's already done.

Transplant is a Go!....AHHH!

Well, I got the call....the transplant is approved!  My transplant coordinator gave me a tentative schedule which could change depending on how smoothly (or not) things go.  So, here it is...for now anyway.

Thursday, April 12th- Husband and I fly to LA to sign paperwork and meet with transplant doctor.
Friday, April 13th- Have my normal chemo at the VA.
Saturday, April 14th-Tuesday, April 24th-  Take Neupogen injections to increase white blood cells and stem cells.
Monday, April 23rd- Be in LA for blood test
Tuesday, April 24- possibly April 27-  Stem cell harvesting (hopefully they will get as many as they need sooner, but said to plan to stay until Friday)
Wednesday, May 2nd- Admitted into the hospital to begin high dose chemo with transplant.
Wednesday, May 23rd-  Hopefully released from the hospital but still have to stay in LA area
Wednesday, June 6th-  Hopefully allowed to return home (Alexa turns 2 on the 7th.  I hope I am home for her birthday.)

These are just estimates.  Some of it depends on how well my body recovers.  AHHH!!!  It is almost here!!

So...it is a clot...???

I spent Monday making phone calls to make sure that my doctors were aware of my ER visit...I didn't want to get looked over...I wanted to make sure someone was going to do something.  I left I message with my Las Vegas oncologist, then I even left a message for my UCLA oncologist and emailed my UCLA transplant coordinator.  My UCLA oncologist called me, I was amazed...and she let me know that her fear was that if the mass was putting pressure on the vein, then it was growing.  She said she had spoken to LV oncologist and he was looking into it.  And I sent her office a copy of the CT scan just in case.  Then my LV oncologist's office called to schedule my appointment for the morning of Wednesday the 4th.

Since my ER visit my body and emotions have been through many changes.  Over the weekend the swelling started moving into my neck and underarm area as well, creating some extra soreness and sensitive spots.  This of course freaked me out.  I wasn't sure if I should go back to the ER...I ended up just staying home and trying to rest it and still keep it elevated.  My arm is keeping a good color most of the time.  The veins in my chest and upper left arm are more visible.  It is still swollen and sore but doesn't seems to be bothering me quite as much.  Maybe I have just adjusted to it.

This morning I went to my appointment with the oncologist.  He said that he had the radiologist compare Friday's scan to my scan from October and that the mass in my chest had shrunk, not grown. (YAY!) He said the radiologist description on Friday didn't make much sense because if the mass was pressing on that vein, the Superior Vena Cava, my whole upper body would be swollen, not just one side.  He said looking at me, one swollen arm and the veins being more noticeable made him believe it was a clot.  He said that they could do a dye study to see how the blood was flowing but he wanted to start me on medication right away.  Then he sent me to see a surgeon that he consulted with.  The surgeon explained a little more to me about the blood flow, where my port is positioned, and where they think the clot is.  They think the clot is...kind of...behind my collarbone.  He said this is a difficult area to see with the ultrasound and even the CT scan.  He also told me he could move my port...no thanks, I don't want any more surgeries.  He told me things he could do and basically said he hopes he doesn't have to; that hopefully the problem will be solved.

So, now I have a blood clot and I am having to take two shots of Lovenox in my stomach everyday until my other medication, Coumadin, builds up in my system.  I have to go to a Coumadin clinic Friday to have my levels check in case they need to adjust them.  So...hopefully this will take away the clot and swelling. :)

Chemo then ER

Friday...was not a fun day, actually I'm still not having fun.  I went to chemo with some shoulder pain when I got home the pain seemed to have lessened, but my left arm felt a little tingly.  I got up to go to the bathroom and my arm suddenly felt so tight.  I looked at my arms next to each other and the left was swollen and discolored-- kind of purplish.  I kind of freaked out--had a little panic attack.  I called the nurse at the VA to see if she thought it was serious enough to go to ER, which she did.  I told my husband that he needed to take me and he was going to have to miss work and stay home with the girls.  I was trying to remain calm but I kept thinking, "I have a blood clot, please let them find it before I die."  I know...dramatic...but I'm sure you would have been scared too.  They took me back pretty quickly and did an ultrasound to check for clots, which they didn't find.  I was glad but then I wanted to know what was happening.  They sent me for a CT scan, and after waiting for quite awhile the doctor gave me the findings.  The doctor who read the scan said that the mass in my chest is pressing down on a vein or artery (I forgot which) which is causing the swelling in my arm.  He released me with pain killers, a sling, and told me to keep my arm elevated as much as possible.  I have been keeping my arm elevated, if not it quickly tightens with the swelling and becomes uncomfortable.  Now however my neck and area around my arm are also starting to swell and make me uncomfortable.  I'm afraid I might have to make another trip to the ER but I hope not.  I am trying to relax....

Having Fun

Well I have had two chemos since my last entry...hopefully Friday will be my last of this chemo, but I'm still not sure....

I did something unusual for me on St. Patrick's Day...I went out...had a girls night.  It was so fun!  We ate at the Hard Rock and went to see the Jabawokeez.  Then we even went down to Fremont Street for a little while...I think everyone there was wearing green.. I even saw a guy with a green tutu on his head. :)  Now I just need to go on a date with my husband. :)

Last week I felt better than I have felt in a really long time.  I felt like I had more energy and I was so happy I could breathe again after that bronchitis.  The only "bad" thing that happened was I had a rash that started on my chest, then spread to my arms and legs.  It wasn't a bad rash...just a little annoying.  I let the doctor know about and look at it on Friday at chemo.  He said it looked very mild and to continue using topical cream and take Benadryl if needed.  It is actually one of the side effects of one of my chemos. I thought it was kind of weird to show up now but...

I have my dental exam scheduled for the 3rd, so hopefully after the transplant team and the insurance get that information the transplant can be approved.  I am pretty sure that I will be getting another PET scan soon; probably after my next chemo.  They will want to make sure that my cancer is still shrinking (hopefully gone) so that the high dose chemo and transplant can move forward. 

I try not to think about it...but it makes me so anxious.  I'm not sure why...I wish I had a little better understanding of how I will feel...my limitations etc.  This is something that is hard to research because peoples' bodies respond differently....  I guess it is time to start writing those questions down again and asking my transplant coordinator and/or doctor.  I hate that I will be away from my husband and little girls for that length of time but I'm not sure I would want them to see me that way either...I don't like being seen as sick or weak...  And I get pretty grumpy when I don't feel good...  I'm just going to miss them so much!! 

Bronchitis

Well since my oncologist and no one from his "office" got back to me I did end up calling and getting an appointment with my primary care doctor Thursday.  He said he thought I had bronchitis and gave me an antibiotic, an inhaler, and cough suppressant to use if necessary.  My fever finally went away, which I think made a big improvement on how I felt.  My coughing became more controlled and productive...overall I feel so much better.  

After I came home with my diagnosis I again tried to get ahold of my oncologist because I didn't really think that I would be up for chemo on Friday...or that they would want me to go.  I called the VA and left a message, then tried calling the oncology office at the base hospital but for some reason neither of my calls made it to the right department.  Since it seemed like my oncologists assistant wasn't passing on my messages anyway I decided to try another way.  I called my case manager and let her know the situation and just asked if she could send him an email.  She asked me to hold to see if she could get ahold of him and then transferred me to him...I was amazed!  I had been trying to talk to him for over a week.  But he said that we would postpone chemo and our appointment until next week and he would let everyone know.  Thank you!

Fevered LA Trip 2

Since my last post I got to get a massage...it was so nice.  She worked out the tension in the left shoulder, which not only helped with my pain but also my anxiety over it.  I have still had a temperature...at least once or twice I thought that it had gone away.  Sunday I was thinking that maybe I should go to the ER because I've had a temperature a long time and probably have some sort of infection, but decided to wait until after I came back from my Monday appointments in LA.  I called my doctor's office again this morning. I actually got to talk to a person and she said she would contact the doctor to see what I should do.  They had never returned my phone call from last week which the lady today said she had not heard.  So I am waiting for instructions again.  If I don't hear from her by noon I'm going to do something else...maybe try my primary doctor.

My trip to LA went smoothly.  My flight left at about 6:30 and we landed early, I think about 7:15.  I met a couple visiting from Australia while I was waiting for the shuttle.  They were very nice and made me want to go visit Australia with their descriptions of it.  I caught the 8:00 shuttle and made it to campus about 9.  I got my chest x-ray out of the way first then went to the lab where they took....many tubes of blood. Good thing my hands were cold...I put them on my forehead. :)  One of the tubes they had to put in a bag of ice...I forgot to ask why, but I thought that was kind of weird.  Then I got an EKG, which was surprisingly painless and fast.  I really didn't know what to expect.  I went to my 11:30 Pulmonary appointment and got there before 11 but they took me back right away.  At first the technician was going to have me sit in a little glass box, but after looking at my face said we could use a different machine.  Thank goodness I have an expressive face! :)  I HATED these tests.  They are horrible...."take a deep breath"  "blow, blow, blow"....I think I did poorly.  The first test I had to repeat after taking puffs of Albuterol.  Finally the breathing torture was through and I could move on.  I was done about noon and my next appointment was at 1, which I decided to just wait for and then eat afterward.  I got called back for my echo which was done in 15 minutes.  The screen looked a little different than the other ones I have seen, and he did measurements which reminded me of my ultrasounds with the girls...I missed them.  Then I went and ate and was able to get on the 2:00 shuttle back to LAX but my flight wasn't until 6:05.  I asked if I could get on an earlier flight, which they said I could, but it would cost an additional $150 ... no thanks!  So, I just waited and bought the girls each a present.  There was enough daylight left during takeoff that I got to see the ocean when we were flying over it...Yikes! ;)  I was so happy to be home and hug my family.  Adrian had made dinner and it was yummy.  It was nice to be home after a long day!

Thrombosis??

People should probably not be allowed to google their symptoms when they are feeling nervous about them.  Since Friday afternoon I have had pain in my left shoulder and my port has felt very sensitive.  Yesterday I discovered that I have a low grade fever, which I still have.  And today my hands and arms just don't feel quite right...they feel weak...tingly maybe...kind of hard to explain.  So, I googled my symptoms and it brought up thrombosis, which is a blood clot restricting the flow of blood.  Apparently they are common in people with ports...   I put in a call to the doctor and hopefully they will get back to me soon...I am really trying not to overreact.

3rd Cycle Done!

I haven't written in a while...I guess everything kind of becomes a routine and I don't want to bore the people who actually read this. :)  I go to chemo and come home.

Friday was the last chemo of my third cycle.  I have this Friday off and on Monday, the 5th, I am off to LA again.  I will be doing pulmonary testing along with another echo cardiogram, an EKG, a chest x-ray, and a lot of labs.  My coordinator said they would take about 8 tubes for different blood testing that they will do.  I hope I don't pass out. :)  This should take care of all my pre-testing.  The only other thing that I need to do is get an oral exam from a dentist to ensure that my mouth is healthy.  After I pass all these tests I will get approved for the stem cell transplant. 

The closer I get to the transplant, the more anxious I become.  I just want to hurry up and get it over with.  I hope that my body is strong and does well with the chemo and transplant.  I hope that I don't have to stay in UCLA for any longer than I have to.  I need to start thinking of how I am going to handle things when I get home.  I know my Mom is going to stay with me for a while but she can't stay forever...and my husband is most likely going to deploy in June.  I am going to need help with cleaning and get someone to come clean out the cat box for sure.  I am hoping that I won't need any more help than that but I don't know yet. 

On another note, my oncologist said that it is OK for me to get a massage so I am getting one on Friday.  I can hardly wait.  I really need it.  Something is wrong with my left shoulder...maybe a pinched nerve or maybe just a really bad crick in the neck.  It is kind of irritating my port tubing and freaking me out a little bit.