June2013

I am sorry that I haven't done an update recently...I had a lot of things going on at about the same time, so I hope you will forgive me.  My little girl had a birthday, and the older one a recital, and my husband got to come home!!! Yay! 

Also, I got an updated PET scan.  The results were good.  There were two small areas that showed some low activity, but the doctor says
                I'M IN REMISSION! 
The spots will have to be monitored, of course, but it was a good result.  I am not going to lie...I wanted to be able to say I was cancer free. 

The scan also showed there was some fluid around my right lung, which I had drained on Monday.  They were able to get a liter of fluid out, which surprised me.  I was a little uncomfortable as my lung  began to expand back out.  I am still a little sore where they inserted the tube, but nothing major.

Thank you for your prayers and support.  Please rejoice and praise God with me for the good news that I have been given.

I'm coming home

Since my last update, I did have to get more blood and platelets while in the hospital.  Then on Sunday, I was released!  It was so nice to get out.  My mother-in-law flew in Saturday morning, to be my caregiver when I was released.  She got here just in time.  

Monday, I had an appointment at the clinic.  They went over some of the precautions that I will have to take over the next several months as my body continues to recover.  Most of it is probably common sense; like avoiding crowds and sick people.  Also, I have to avoid food that sits out like at buffets, salad bars, and fast food places.  One thing that I wouldn't have thought about is avoiding people who have had recent live vaccinations.  They explained that the worst ones for me to be around would be the chicken pox and shingle vaccines.  When people are given these vaccines, their bodies shed them for several weeks which is fine for most people.  However, with my low immune system, it could actually give me the chicken pox, which would not be good.

My blood counts were fine on Monday, so I didn't have to get any blood products.  I didn't get my counts checked again until Thursday, and found out today that my counts are good. They are all coming up by themselves.  My platelets are high enough that they can now take out my line.  They are trying to get it scheduled for Monday or Tuesday and then I can go home!!! Yay!!!

I am not sure when they will scan me to make sure the cancer is gone but I will let you know when I know.

Thank you for the prayers. I am going home soon!!!

Two weeks down

A week ago I received my stem cell transplant. They brought my stem cells in a portable freezer and defrosted them one at a time. Once it was defrosted, they began to infuse them through my IV. Each bag needed to be transfused within 15 min of being defrosted.  The stem cells, or maybe it was the preservative added to them, made the whole room smell and gave me a strong taste in my mouth.  I had heard that it would smell, but luckily it didn't smell bad. My nurse for the day said she thought it smelled like canned sweet corn, so I'll go with that.  It was a sweet smell and a sweet taste.  A few days later when I was walking the halls, I smelled that smell and knew someone else had received their transplant.

Since then, my body has just been trying to recover.  I re-read my last post and thought, "Well that was kind of dramatic." However the truth is I wouldn't have survived out of the hospital. Since my transplant I have received blood again and platelets twice. For the last several days I have been getting neupogen injections to raise my white count.

I'm not sure when, but I developed a rash over my body.  At first I thought it was a reaction to the adhesive, but then thought it was caused by this strong anti-bacterial soap they were putting in my bath water.  However, it could have been a reaction to the chemo or some of the other meds they have me on.  I think it's getting better, but some parts of my skin look worse due to the petechial hemorrageing caused by my low platelet counts.

I also have some mouth sores on my right side.  So, the right side of my mouth and throat are sore.  It makes it more difficult to eat the already not very appetizing food.

The sores and rash should leave as my counts get higher and my body can start healing. Other than the mouth pain, I have been feeling fine.  I'm just ready to get out of here. Hopefully they will let me out by Monday.  It will be nice to go outside again, and to have different food to eat.  Then I will just be one step closer to actually getting to go home and seeing my family again.

My hair began falling out by the handfuls, so today I let them shave it off....Oh well...it will grow back again.

Thank you for your prayers. God is getting me through this!

One week down..

One week ago, I flew into LA and was admitted to the hospital.  While time has gone by at a normal pace...I really wish I could just fast forward through the coming weeks.  I am ready to go home... but now I have to stay here. After all that chemo over the last week, my blood counts will be dropping and my immune system will down.  I have to stay in the hospital so I can live through this. This next week is going to be the hard one.  

I know that God is in control and that He will get me through this, but sometimes I let the fear and anxiety get the best of me.  Please keep me in your prayers. Just say a quick prayer for me when I come to your mind.

Tomorrow they will be giving me my stem cells back.  Then, I just have to get my counts up.

The schedule

I was admitted to the hospital yesterday.  I got into my room about 5 and then began all the interviews with nurses and doctors. This is a teaching hospital so I will be questioned by many different people who are learning, as well as those who are handling my care.

Here is kind of a schedule of what I will be doing for the next couple weeks.
Thursday, April 18th-  BCNU chemo 
Friday-Monday, April 19th-22nd-  etoposide and arabinoside each twice a day
Tuesday, April 23rd- melphalan
Wednesday, April 24th - rest
Thursday, April 25th- stem cell infusion

What they are doing is hitting me with high doses of chemo, then rescuing me with my stem cells, which they just put back in my body through my IV line.  After I get my stem cells the rest is about monitoring my recovery.  My blood counts will drop really low the week following my chemo.  I may need blood or platelet infusions, and I am at a high risk for infection.

When they fill like my counts are good enough, usually 10-15 days after receiving stem cells, I will be released but have to stay in the area for up to two more weeks before I get to go home.  It really all depends on how well and how quickly I recover.

Transplant is Back On

I finished my second COAP cycle on March 21^st.  The next week, March 25^th-the 29^th, my doctor had me taking a bunch of different tests.  I had an EKG, an echocardiogram, a pulmonary exam (lung function test), a bunch of labs, and of course a new PET scan.  Everything looked good!! EVEN the PET scan!! Yay!! Thank you Jesus!!!

 

Now all I had to do was wait for my LA doctor to say that everything looked good enough for transplant.  My transplant coordinator went ahead and scheduled me to be admitted on April 8^th.  I had to call my Mom and tell her she needed to be here in person by Friday the 5^th, so that I could get her a long-term pass for base access.  So, my parents got here Thursday evening and Friday we were able to get the passes for my Mom, with help from my husband’s squadron.   I also received a call from my coordinator and was told they didn’t have enough information from my scans to approve me yet, so she rescheduled me for admittance on April 11^th.  On Wednesday, the 10^th, I still hadn’t heard if they were going to approve my transplant, which I admit was a bit infuriating.  I needed to tell my kids if I was going to be leaving the next day and not coming back for several weeks.  So, I called the coordinator to find out what she knew and also inform her that I had a fever and cough.  When she got back to me, she said the doctor had approved my transplant!! But I couldn’t be admitted with an active infection, so I wouldn’t be admitted Thursday after-all.   However, the doctor still wanted me to come to LA, so she could check me out herself.  So, I flew to LA and the doctor officially approved my transplant.  I signed my paperwork and was reminded of the process and risks, etc. involved with the transplant.  They said as long as I am over this bug, I will be admitted Wednesday, April 17^th.

 

So, it looks like this transplant is officially back on!!  It was almost a year ago that I thought I was going to have this transplant but didn’t get to after a PET scan showed new growth.  One thing that I have been learning the last few months is that God’s timing is perfect.  I may never know why, but I definitely believe that my transplant postponement happened for a reason.

 

I do appreciate and ask for your continued prayers, not only for me, but for my family.  I know that it is hard on my husband that he is not here at this time, and my girls….well they have never gone a day without their Mama.  And on top of that, they don’t have their Daddy at home right now either.  Although they will have my Mom here, which I am so thankful for, I know this separation is going to be hard for them to deal with.  So, please remember them in your prayers.  Thank you!

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. 

Valentine Chemo

Valentine's Day


Today I woke up already dreading having to go to chemo today, but...

I tried making the girls special Valentine pancakes...neither of them liked or wanted them...they wanted their regular pancakes. :(  Well, I tried.

Then I really just got the girls and I ready.  I packed the girls' lunches and dropped them of with the neighbor for their Valentine party and play date. :) And packed a to-go salad for me.

Then, off I went to get my new chemo.  I talked to the doctor and he explained that some of the drugs were different than the chemo regimen that we had previously discussed because these drugs are simply unavailable now; no longer made.  So instead of C-MOPP, I am on a regimen of COAP; Cyclophosphamide, Vincristine(Onocovin), Cytarabine(ARA-C), and Prednisone.  My chemo cycles are 28 days long.  I have chemo treatments on day 1 (today) and day 8 (next Thursday), then they want me to go back to the office for a shot of Neulasta(just helps blood counts) on day 9.  So, chemo once a week for two weeks, off two weeks, repeat.  The predisone is a tablet I am supposed to take day 1-14.

I forgot to mention in my previous post that I am now having at least somewhat frequent fevers, mostly at night.  The nights that my fever are the highest, I have night sweats. Which means that I wake up 1-3 times throughout the night drenched; my clothes and the sheets below and on top of me soaked. Yuck!  So, I change my clothes and switch to the other side of the bed, hoping it doesn't happen again before I wake up.  Both the fever and night sweats are common for my lymphoma but...I think we are going to need a new mattress when this is over. :)

I think that is it for now...Thank you for your continued support, love, and prayers!

Update February 2013

Well I guess I need to write an update since some of you might be wondering what is going on with me.

I had to re-schedule my PET scan for December 15th.  I got the results a week or so later and the doctor said the cancer is still growing and spreading.  There were some new areas of activity.  One of those areas was my underarms, specifically my left side.  What is weird is that I felt a lump, but it just kind of came out of nowhere...it was large quickly...and painful, so I didn't really know that it was my lymphoma until the doctor confirmed it.  I was just thinking, "oh great, what else is wrong with me".

When the doctor told me my results, I asked if I could be re-biopsied.  I just wanted an additional confirmation that we were fighting the right disease.  So, mid-January (sorry don't remember the date) I went in to have a biopsy done.  They took a core needle biopsy from my painful underarm lymph node.  Which for some strange reason helped the lump to be less painful.

The same day as my biopsy, I also had a dye study done on my port.  I had started having pain when the nurses flushed my port.  When I went in early January to have my port flushed I warned to nurse and when she tried to push the saline in she said that it was hard to do.  She could also tell that it was quite painful for me and asked if it felt like pain or pressure, to which I answered pressure.  It is a strange feeling to try to explain but it hurt, believe me.  I am pretty tough and it was bringing tears to my eyes.  Because of this they ordered a dye study.  The dye study showed that my port catheter was blocked, by forcing dye and saline in my port, another painful experience.  At first they told me there was a hole and then that my lymphoma was pinching off the catheter, so....either way it was not functional.

The doctor spoke with me about what I wanted to do, as far as treatment.  He of course suggested beginning chemo again, and going with the regimen that he had spoke to me about before.  He also said that the port would need to come out, and he really wanted it to be replaced. 

So, last Friday, the 1st, I had a new port put in and the old one taken out.  I had some nice neighbors watch the girls for me and another one drive me and wait for me.  Thank you ladies very much!  The procedure took a little longer than expected, but turned out fine.  I am a little sore and stiff, but fine...as long as nothing touches my incision sites.  Of course with two little girls...let's just say I scream sometimes.

I have asked my doctor's office for a schedule of the chemo cycles, but the nurse said the doctor is no longer sure what cocktail he wants to start me on.  So...until then I am waiting.  My sweet neighbors have also volunteered to help with and watch the girls when I begin treatment.  I am extremely thankful for their help, especially since my husband is away for work for a few months.  Thank you again ladies!

So....that is it for now.  Thank you for your continued prayers and concern!  I will try to be better about updating.