Saturday November 26

Hi!   I hope everyone had a wonderful Thanksgiving!   My awesome husband cooked me a Thanksgiving dinner and brought it in to the hospital since they don't do anything here for the holiday.   You just choose the food off the standard menu.  

 

 

The best Thanksgiving dinner ever!!!

Thank you Colin for the thoughtfulness and hours of slaving over the stove!   I know it wasn't easy but I appreciate it more than you know and I love you to pieces for all you do for me!!   You are amazing and I don't know what I'd do without you!!

As far as progress goes, the chemo seems to be doing its job.  We now have infectious disease doctors on board with our team along with the oncologist and transplant team.  They are all working together to make sure that the treatments are all in my best interest.

I am making it through day by day.   I'm in a lot of pain but they tell me that it means the treatment is working.  

There's really not too much new to report.   Just trying to keep my mind busy and stay positive.  I'm doing my best to talk myself through the pain and manage it the best we can.   

The doctors should all be here on Monday and maybe we will have more information then.  Again, thank you for your patience I will do my best to update as much as possible.  

Sunday November 20

It has been hard to update my blog with everything that has been going on. 

The latest update is that I have the most aggressive type of ptld you can get.  It's a post transplant type of cancer that is incurable.   It can go in to remission but it will always be in my system.  They started me on heavy chemotherapy this week which is making me sick but it seems to be responding pretty well.  The type of chemo I'm getting is called CHOP therapy.   It is a couple different steps that they do each session and I'll get it every three weeks.  I may get the retuxomap treatments on my weeks off from the CHOP.  They are determining all that now.

They are going to have to scan me in the next couple of days to see what progress is being made.   Please bear with me through this difficult time and understand it's going to be hard for me to update daily.  I will do my best to update.  

As far as how things are going....I got two surprise visitors on Friday.   Kelly and Matt cane for the night! It was a surprise!   We went outside and sat at the benches because it was so nice out so the nurses gave me some freedom off the floor.  While we were out there someone sat on the bench real close to me, I looked up and it was Amber.   I started crying and couldn't stop.  She surprised me too.  We went back to my room and they started my chemo.   Kelly and Matt had to leave because of the baby.  Amber and Colin stayed til she was done administering the chemo which took two hours.   Colin went back to the apartment and amber stayed with me.  It was a process but pretty painless for the most part.  Amber left after I got settled into bed for the night.  It was such a nice surprise.   I was really happy they all came.  

The next morning everyone came in at their own pace. At lunch time we ordered food.  Everyone ate and then they started to head out.   It started snowing off and on.   They wanted to leave early enough so that it wouldn't be dark when they were driving.   

They all left by 2.   Colin and I just chilled out the rest of the night. 

Each day so far has gotten a little worse.   They think it's working really well and killing off the cells so I'm in a lot more pain.   It's going to get worse before it gets better is what they are telling me.  We will see.   Im going to try and get some rest.  I will post more as soon as I'm up to it.   Have a good night!

Wednesday November 16

Today has been pretty uneventful.   I'm having a lot of nausea and pain.  Yesterday's treatment really took a huge toll on me.  I haven't been able to do much.   

Colin and I played Phase 10 for a little bit.   He kicked my butt as always.  After cards I had my lunch and took a nap.   Of course I was interrupted four times in an hour.  The hemo docs came in to check on me.  They still have no updates on the pathology.   So we are still waiting.  

I'm just spending the afternoon/evening relaxing.   Colin just went home for the evening and I'm camped out in my bed.  I will update more as soon as we hear something.   We are just in a waiting/holding pattern at the moment.   Have a good evening.  I'll update you tomorrow. 

Tuesday November 15

All my labs came back ok.  There are a couple replacements I need but they are doing round 2 of the chemo today.   They got me prepped and ready around ten or so.   They had to pre-med me with Benadryl and Tylenol to avoid reaction.   They also give me this steroid that makes you feel like you are on fire. 

They started the medicine via iv.   It took 6-7 hours to go in to my system fully.  It really takes a toll on you and wears you out.   I am extremely nauseous and in a lot of pain.   It's all to be expected.  We are still waiting on the final pathology reports and I will update you as soon as we know something.  

I don't have much more to report.   Have a great evening and I will update tomorrow.

Monday November 14

Pretty uneventful day.   Still have no new pathology results.   The stains were sent out they just aren't all back yet.  The doctors are waiting patiently for the results as well.

The "hemonk" doctor that did my biopsy came in and tried to tell me I was getting a spinal tap.  I spoke to my transplant team and was told absolutely not unless they spoke to Dr. Cruz first.   I told her and she seemed a little upset but after what she put me through last week there's no possible way she is laying a hand on me.

I spent the rest of the day just trying to tolerate the pain.   I went to bed fairly early.  It was a long day for me

Saturday November 12

Mom, Dad and Dana came to visit today.   It was a nice change of pace.   It let Colin have some time to go visit with his mom.   Cyndee was hospitalized for a couple things and was moved to the icu.   Please add her to your prayers that everything thing will work out for her.  We are really worried and are all praying that she is strong enough to make it through this with flying colors.

When mom and dad and Dana got here they brought me bags of goodies.   Dana got me this really cool humidifier/oil diffuser.    Dad got everything together and hooked me up.

They also brought me my favorite donuts, whoopie pies, and chicken pot pie to have for dinners.   All of which are to be eaten in moderation.   😀

We sat and talked a little bit and then played cards.   We played Phase 10.   I had never played before and neither did mom.  We caught on pretty quickly.  We played until lunchtime.   I decided I wanted Arby's for lunch so we gave mom and Dana our orders and they left to go get it.  We ate lunch in my hospital room.  After lunch Mom decided she was tired and she left to go get a nap.  Dana went with her.   They were gone a couple hours.   Dad said I napped about an hour.   Mom and Dana came back.   They stayed for a while and left to go get something to eat and go to bed.   I said my goodbyes and they went home.   Time for a new day tomorrow.  

Saturday November 12

Mom, Dad and Dana came to visit today.   It was a nice change of pace.   It let Colin have some time to go visit with his mom.   Cyndee was hospitalized for a couple things and was moved to the icu.   Please add her to your prayers that everything thing will work out for her.  We are really worried and are all praying that she is strong enough to make it through this with flying colors.

When mom and dad and Dana got here they brought me bags of goodies.   Dana got me this really cool humidifier/oil diffuser.    Dad got everything together and hooked me up.

They also brought me my favorite donuts, whoopie pies, and chicken pot pie to have for dinners.   All of which are to be eaten in moderation.   😀

We sat and talked a little bit and then played cards.   We played Phase 10.   I had never played before and neither did mom.  We caught fire  on pret quickly.  We played untilsome  lunchtime.   I decided I wanted Arby's for lunch so we gave mom and Dana our orders and they left to go get it.  We ate lunch in my hospital room.  After lunch Mom decided she was tired and she left to go get a nap.  Dana went with her.   They were gone a couple hours.   Dad said I napped about an hour.   Mom and Dana came back.   They stayed for a while and left to go get something to eat and go to bed.   I said my goodbyes and went home.   Time for a new day tomorrow.  

Friday November 11

Nothing new going on.   Still being told we are waiting on the final pathology reports before they can start treatments.   They also scheduled my follow up in few weeks for a repeat ct scan.  

Wednesday November 9 cont'd

They just got the result as back from the CT scan of my hip.  There's a hematoma around the site where they did the biopsy.   They said my body should re-absorb it.  They said it going to be painful.   They will come to me and talk to me in the morning.   

I'm just supposed to take it easy for now and get help going to the bathroom or getting up.   It's not really going to hurt anything except cause a lot of pain.   Some of the pain is nerve related as well.   They gave me some heat packs to put on it for now.  And are treating it with pain meds.   

I will update more tomorrow.   Just want to let you know the update so you weren't worrying.   

Have a good night!    

Wednesday November 9

Colin stayed the night last night since they were giving me the first round of the chemo drug.  He didn't want to leave me in case anything happened during the night or if I had any reactions.

They started the meds around dinner.   I had to be pre-medicated before the could give me the rotuxamap.   They gave me Tylenol, Benadryl and a steroid.   I'm ok with the Tylenol and Benadryl.   I had never gotten the steroid they gave me before but it made me feel like I was on fire when they gave it to me.   It was a very odd feeling.   The heat feeling started low and creeped up through my body and into my face.  Odd feeling.

About a half hour later an iv team nurse came in to start the medicine.   They start it at a low rate and take vitals every half hour.   I took it ok for the most part.   At times it was nauseating, it also made me itchy and hot.   The Benadryl helped a lot with that.  It took a couple of hours for the medicine to finish.   It was pretty potent but I think I handled it pretty well.  

I was up most of the night getting meds, getting labs drawn along with feeling like crap.   It was a pretty crappy night.  

Today has just been a day of recovery.   I am in a lot of pain.   I'm really nauseous and have added pain in my right hip and leg from the biopsy yesterday.   I'm having a hard time walking on it.  I'm just going to rest today but wanted to make sure you had an update.  

A

As of now we do not have any additional information except the diagnosis.   Hopefully tomorrow we will have some more biopsy results.   I will keep you posted as we learn more.   Have a good day!!!  Hopefully I can get a nap in and get a little sleep.   As always thank you for your support!! 😘

Tuesday November 8

1st of all......Happy Birthday to Honey.  Today we are celebrating you even though you are no longer with us.   You are always in my dreams and thoughts and prayers.   I know you are with me in more ways than one as we are going through this horrible ordeal.   I love you more than anything and hope you are having the best birthday you could possibly have now that you are in heaven with Pap Pap, Jackie, Steve and your siblings.   We miss you so much!!!   Party it up and make sure you have a beer and a piece of coconut cream pie to treat yourself!  Love you to pieces!!! 💗

We have a little more information now so I can give you a more concrete update.  

Biopsy results have determined that the mass in my neck/behind my ear is called PTLD.   It stands for post transplant lymphoproliferative disorder.   It's basically a type of cancer that transplant patients get.   There are a bunch of sites online that you can look it up on and it explains it.

In order to start treating me for it they needed to do a bone marrow biopsy.   They did it this morning in my room at the bedside.  That was the most painful procedure I have had done while awake.  The procedure took about an hour.   I want to thank God for my nurse Christine today.   She held my hand and talked me through breathing in a very soft, soothing voice.  She let me squeeze her as hard as I could.   I'm surprised she isn't black and blue.  Thank you Christine!!   Not sure I could have done it without you!!

Colin was a trooper through the whole thing.   Even though he hates needles and blood he was able to soothe me through the procedure and rub my legs.  I was so proud of him!!   Thank you Colin!!!  This is difficult and I am sure it was hard to watch.  

After the procedure I had to lay on my back for a few hours.  I'm being given my first dose of the 

Rituximab here shortly.  They pre-medicated me to hopefully avoid any complications.   I will update more later as we go through this so please bear with me.   It's a new thing for me so I'm not sure how I'm going to feel.  Thanks!!!   Please keep sending the prayers my way!

Sunday November 6

Docs came in early today to make their rounds.  There really wasn't anything new.  They went over my labs and gave me the replacements I needed for mag because it was a little low.  They gave me all my supplements.   And hung different Iv's throughout the day.

Mom and Dad had come for a visit they got here early Saturday morning and left yesterday around lunchtime.   It was really nice seeing them and having them here.   They were also here when the doctors made their rounds which was nice so that they could ask questions  that they had.   I think them being able to hear what the doctors had to say made things a little better so they understand why we don't have concrete answers just yet.

We also got some surprise visitors today.   My cousin Melisssa stopped in to the hospital with her daughter Madison and son Stevie.   They stayed for a little over an hour.  Mia, the youngest daughter was at a dance competition in Monroeville so they were really close and decided to visit.   They have been very involved and very supportive throughout my entire ordeal starting with the Volvulous is Dec 2014.  Thank you for coming to visit.   It was a nice surprise and always great to see you!  

Colin was in and out running errands and cleaning up the house etc so I could visit with everyone.   He didn't want to be in the way and we are in a horribly tiny room.   He came back to hang out right after Mom and Dad left.   

My day.....still having horrible pain in the abdomen and my face, neck, throat, ears etc.   it's still a waiting process.   All they can do right now is keep me comfortable.  Hopefully we will know more tomorrow.   I will keep you posted in the next day or so.   Have a good night!   Sweet dreams!!!!!   

Saturday November 5

I was up all night/morning.   I'm dealing with a lot so please try and bear with me.   I am undergoing some extensive testing on my throat, neck, lymph nodes, ear, nose and head in general.  I have swollen glands, sore throat, constant nose bleeds, earache and headache.   We only have preliminary information at this point in time and are in a waiting process.   The doctors did a biopsy on me on Wednesday via a small surgical procedure.   They did find a mass but we are waiting on the pathology results which wont be back until next week.   The oncology team will then meet with my transplant team and will come up with a plan of attack.

Please understand that we are still trying to wrap our heads around all this new information and will do our best to keep you informed as things happen.  This is a lot of new information for us to grasp and I don't mean to be rude by not posting.   I've just been having some extremely difficult days.   

That being said, as soon as we have a plan of attack and find anything out I will post more.   Thank you so much for your constant love, support and prayers.   We really need them right now so please keep them coming our way!    Thank you!!!!   Love you all!!!!   😘❤️😘💜

Wednesday November 2

I can't believe it's November!!!!!

I'm still in the hospital under observation.   They did a minor surgery late Tuesday afternoon to biopsy a small pocket they found behind my nose.   I am in so much pain.   My abdomen is killing me and on top of that my whole face hurts.   My glands, throat, ears, nostrils etc.   it is extremely uncomfortable.   

I'm so exhausted from the procedure but making due.   My nose has been bleeding for the past two days.   They gave me some sprays to help clot it.   Hopefully it starts to work soon.

It was a long day just trying to get comfortable and to get some actual sleep.   I will post more tomorrow.  Have a good night.  

Tuesday November 1.

Fastest update ever.    Well.....biopsy is done.   They literally whisked me away around 2:30/3:00 or so.   I was in the bathroom,  next thing I know, the nurse is in there with me changing me into a gown and unhooking my iv from the pole so the surgeon will be able to hook me up to what they need.   They put me on a stretcher and took me to the OR.   I was prepped and out of it before 3:30.   Now I am in recovery and waiting to go back to my room.

The doctor came in and reviewed what he found.   It's not a few fluid / puss sacks, it's actually a mass of some sort.   He took biopsies from several portions of the mass.   Unfortunately they won't have the pathology results bc it takes a few days to grow any bacteria etc. sucks but as soon as they give us any info I will let you know❤️

Tuesday November 1

1st Things 1st......

 

I know I haven't been posting much.   I'm really sorry.   I know it's the least I can do to keep those of you following me and praying for me updated so you know what's going on.    

The last 2.5 weeks have been pretty difficult for me.   I was hospitalized two weeks after my surgery.  I was discharged on Monday (this past Monday).   I went home with Cyndee to my apartment because she came to give Colin a break.   We got back to the apartment around 2.   I layed down and tried to nap.   She hung out in the living room and checked on me several times.   I layed in bed and continually felt worse.   On top of my usual abdominal pain I now have a sore throat, glands the size of golf balls, an earache, jaw ache, lots of mucus that won't come out and no hearing in my right ear.

We callled the transplant coordinator on call with no response.  I called back and was told they would be in touch shortly.   No one callled back so we decided to just go to the er.  We got to the hospital and were taken right back.   They gave me pain meds, fluids and Benadryl.  The ER docs spoke to my transplant team and got ENT involved.   They did a ct scan and MRI of my neck and ear areas.   There are pockets of fluid that they aren't sure what they are so now I have to be taken to the operating room for biopsies.   I'll be put under general anesthesia and intubated during the procedure.   It could be as simple as draining fluid from the area and it should clear itself up or it could be as complicated as removing adenoids, tonsils etc.  

There is a substantial risk of bleeding for me because of all my blood thinners but we don't really have much of a choice.   Dr. Gonoza said he will be there with me through the procedure in case of any complications.   So for now, I could be called at any time to go down to the or.   I will try to be better about posting.   I will be in touch.   Have a good evening!