October 13-October 20 - Petscan & Spinal Tap Happen

Ok... So Monday October 13th comes. They schedule Chris to go down to down to petscan and to radiology for the spinal tap.
The reason they do spinal tap down there (when they are not successful at bed-side) is because they can see exactly where they need to poke to get to the spinal fluid. A neuroradiologist does the spinal tap... and then a fellow (From Dr Strair's team) does the push of chemo into the spine.

Well ,listen to this...
Remember the fellow that told us on October 10th that her brain was not efficient? Yea, well she was the one down in radiology who was to push the chemo... She was not there at first... She walks in, and immediately his blood pressure and heart rate went up. When it was time for her to do her part, the neuroradiologist actually tells her to assist him and he takes over. Chris said she looked like a fish out of water.... So spinal is all over... the fellow leaves.. and the neuroradiologist basically agrees with Chris that he has no confidence in her.

Chris is sent back to his room. I come back to the hospital. We spend the night hanging out...
I go to work the next day (Tuesday Oct 14) The team of doctors comes around.. still no petscan results... ugh...
Finally Chris is frustrated waiting for results. they usually rush to get his results
He calls Dr Strair and immediately he is like "why havent the petscans been read yet?"
40 minutes later he calls Chris and tells him there is new activity on the petscan. He tells Chris he can go home and come see him in 2 days...
October 16th, we go see Dr Strair. They tell us about the new activity. Dr Strair needs to find out if these 5 new lumps/growths on Chris's thighs, belly, and elbow are leukemia or not. We have an x-ray after the appointment to make sure that there are no growths on bones that might cause a fracture. And, we have the biopsy of a bump on the right thigh scheduled for Monday the 20th
The 20th comes.. Dr Partridge- who we love- removes the growth... Chris feels good.. they used a local.. so he can go home almost immediately... we go home and await the results... it shouldnt take more than a few days...

OCTOBER 3 to OCTOBER 12 (including my meltdown on Oct 10)

Ok... so now its October 3rd... the day after the finger tumor was removed.
Chris is feeling ok... but the finger is painful...
He has a few uneventful days... but his joints feel achey/painful here and there...
By October 8th, the joint pain worsens. We have an appointment for Friday October 10th to sit down with the doctor about the timeline leading up to transplant. Its coming soon

Basically, in the national bone marrow database, of millions of donors, they found a few close matches... there is an exact match. I read something like 70% of patients have trouble finding a donor.. so this is excellent news.
If there were whole siblings, there would be a 1 in 4 chance of having an exact match
Otherwise, you rely on un-related donors.
We do not know who the donor is or where they are from. After 1 year, if the donor chooses, we can find out how to contact them
Donor has to get clearance from their doctor, and Chris has to get a few standard tests as well...
Then the transplant is scheduled. Chris gets admitted. gets chemo and then gets new bone marrow...
Well, the day before this meeting, (OCtober 9) Chris's joint pain is so bad that he cannot walk down the hall to the bathroom on his own..
So we get to the doc on October 10th.. they see him in a wheelchair and see his leg weakness...
they do bloodwork and send him right across the street to the ER...
What a day!! Dr Strair called over with all the info on Chris.. suggest MRIs etc... they suspect something is going on again in his spine causing the leg weakness
We sit all freakin day in the ER waiting for a room (cus they will admit him) and for MRI
See, remember, Chris needs anastesia with his MRI. major claustrophobic
So, we see a ton of doctors.. the ER doc, the head of ER, the nurses, some fellows and residents, the head oncologist on duty from Dr Strair's group... everyone asks the same questions
Chris is feeling ok cus they have him on steroids and pain meds.. after a few hours in the ER, he can stand a lot easier...

So listen to this bullshit... the fellow on duty, she is a doctor right? well there is major language barrier. major..
She is asking him questions, he cannot understand her.. I interpret.
He says his answer.. she doesn't understand.. I interpret.
She asks for some history on him (look at the chart, PLEASE)
She comes back at one point and actually says "I am sorry, my brain is not so efficient") Yea, that's what she said. Poor Chris. I was frustrated...
So, they finally take him to MRI. Its gonna be a few hours.
I go home to get clothes, freshen up, shower, and then I stop to get him food (he requested)
I call the ER desk, as I was told was the best place to call to find out where he was after MRI
I am told he is all done, recovered, in the ER, awaiting transport to his room in 5North
So, i get the food, I rush back. I have 2 laptops on my shoulder, a bag of clothes, my purse, the food... and i get to the ER and they tell me he is probably in a certain room.. he isn't there.. finally someone else says, oh no he is in recovery still
It was the worst day... the person on the phone was explicit that he was ready to go to his room.. and after talking to seriously 5 people in ER, they tell me they will call recovery.... Did I mention that i have a million bags on my shoulder?
I normally do not complain, but I have been so stressed, that a few screw-up nurses, and i am ready to either cry or scream... poor Chris is gonna be starving and now his food will be cold.. they direct me to the recovery room and give me an extension to call
So, I travel across the hospital and cannot find the damn place.
I call. She tells me i cannot see him yet.. go back to the waiting room
are you kidding? he was groggy from anaesthesia...
I told her what i was told (about him being all recovered)
So she calls me when i can sneak in and see him.. she tries to give me directions on the phone to the recovery room. I am listening, and she is telling me stuff like "walk away from the parking deck, down the hall, it curves, pass PACU (whats PACU?), pass blah blah, make a left, go through double doors, then left and double doors"
I seriously thought i was going to have a nervous breakdown. It wasn't her fault.. it was the damn day i had.. but do you know how big this hospital is???? I am tired.. i want to see Chris but i seriously want to cry... i am so mad that they misinformed me in the ER.. so mad i could have had an extra hour laying down at home... and the damn ER person couldn't tell me the right info...
I know this all sounds silly and petty... but these people.. the least they can do is give me correct information... don't they realize how many months both of us have been in and out of this place?
Oh and did I mention that during the day, they were trying to give him meds that he wasn't even on anymore... so much for giving updated drug info when you get to the ER... they pulled up old info anyways
So... I go through restricted areas and find the recovery room... i felt like i was on greys anatomy.. except there was no mcStreamy and it was uneventful.. his nurse was nice...
she tells me i can see him for a few.. and then that they will be bringing him to his room soon.. and asks if i want to meet them up there (as she is about to wheel him there).. huh? where am i going that i will meet them there if they are going now??? so she tells me i can come with them if i want... weird day i tell you
so, his eyes are all scratchy from the anaesthesia... and he isn't hungry... and i need xanex... but i left it at home... and i have a 3 day weekend.. thank goodness

So, they keep him on steroids... he is walking so well now

All they see on the MRI is one small new nodule...
they schedule a pet scan and a spinal tap
The doctors on duty are ok.. except the fellow that has already on our bad side

They try to do spinal bedside on sunday the 12th... i watch... (cus i have a new interest in this whole nursing/medical thing) Dr Naylor and Dr Dodzie (spelling?)
they numb him.. and they poke and they cannot find fluid.. they try 4 times.. i felt bad for the doctors and for chris...
they finally give up and say they will do it in radiology the next day....
so i will continue tomorrow

Sept 10th to October 2 (Post 3rd Round of Chemo)

Ok... we've been through post-chemo 2 times now. We should know what we are in for.
After the whole blood clot situation of June, doctors decided to put Chris on Lovenox (blood thinner injections) when he is not low on platelets or having surgery)
Guess who volunteers to give him these injections? Me!! I do not think I mentioned that before... but i started that in early July when he first went home. I actually am ok with it.. and Chris prefers it to giving it to himself in the belly
Those are twice a day. However, when his platelets are low after chemo, they pause. And when he is having surgery they pause.
When he came home from Chemo 2, I was giving him neuprogin shots for 10 days. They help the white blood cells build. 3 shots a day-- not fun. So, now after Chemo 3, I am giving him neuprogin again.
September 10 and 11 he is feeling pretty decent. Sept 12th, we go in for bloodwork, counts are ok... platelets are low, so they give him a transfusion, and they make him sick. Throws up.. feels awful.. so they do not do that 2nd spinal tap I talked about in a previous post.
Sept 15th, he goes back in for standard bloodwork.. counts are pretty low (neutropenic) and they give him platelets again. After that, his platelets are still not high enough for a spinal tap. So they send him home. Sept 16th we have a doctors appointment,. We schedule bloodwork for every other day. My mom finds out there is a chicken pox outbreak at her work (daycare)-- so it freaks her out cus she doesnt think she ever had chicken pox.. although her bloodwork shows an immunity. Chris has never gotten them! Ugh.... We find out there is an exact match donor for Chris for the bone marrow transplant! And, we have to schedule for a bone marrow transplant class. It is required. Counts will be going up and he will have the finger surgery soon so we can get it out of the way before the transplant. Sept 18th and Sept 20th are more bloodwork and no transfusions are needed. Sept 24th, Chris's elbow is acting up with tendinitis again... doc prescribes meds. The next day, his elbow is worse. I take him to the doctor to get a cortizone shot which Dr Strair says he can do. Elbow gets better. On Friday Sept 26th, he wakes up with ankle pain shooting up his calf almost like a cramp and up to his hip. I am already at work , so my dad takes him to the doctor (they want to see him)
He gets morphine.. spends the whole late morning and afternoon there. They let him go home. This was my dad's last day of disability. I thank God my dad was around for all these months to help take chris to appointments. I get to the same-day suite and Chris looks so drained. We get to go home though. He is instructed to call if it gets worse. They think he might have a blood clot that was pressing on the nerve or muscle. He gets better a little more each day that weekend. Oh, and it was time that morning to go back on the Lovenox injection.. so we start that, and Doctor feels it would help if there was a blood clot. Sunday, I have lil Ben's Christening. Chris is just not up to par.. he needs to stay in bed... and my dad stays home with him. Dad is going back to work the next day after 6 months of disability and wasnt feeling great either. I go with my mom to the baptism and Chris rests...
October 1st, we have bone marrow transplant class. My mom comes... its a few nurses (including Jackie) and us. I needed my mom to come.. I need someone else in the hosuehold to hear first-hand how serious a lot of these things are. Everything from sanitizing the house, throwing out leftovers pretty quickly, cat scratch prevention, no plants in the house, etc...
and all the possible complications during and after the transplant... craziness...
I will tell you more about that later
October 2nd, Chris has surgery to remove the pseudo tumor on the finger and we are awaiting the transplant... The surgery goes well... Doctor has to remove a nerve that the tumor was wrapped around.. and he will have no feeling on one side of his finger, but its ok. He is ok with it.

Chemo Round 3 Sept 3rd-Sept 9th

Sept 3rd. They do bloodwork and get the central line put in his arm, but do not start chemo because they are concerned he might have a sinus infection, so they do a catscan. All looks fine, so they say they will start chemo. A fellow of Dr Strair's comes to see him... and we discover that there is a totally different plan for this round of chemo. Chris is pretty surprised because no one informed us prior that there would be 2 spinal taps involved. Thats a lot to take in when you are expecting bags of chemo going in with IV... and nothing else. So, its some more citarabine... I should really remember the spelling. And some methatrxate (which is green liquid)-- there is an initial bag and then a 24 hour bag they start. They have to interupt the 24-hour bag to take him down to MRI.
Remember back in early August (before Lew's visit) they had admitted him when his counts were low. They wanted to do MRIs back then... then they decided it could wait a couple weeks. Yea, well, on August 25th, we got a call from MRI asking where Chris was. Apparently they scheduled it for August 25th and never told him. We were still waiting for a call .. They ALWAYS call the day before about all procedures and surgeries and scans. I wanted to kill this woman.. could barely understand her and swore she called him twice and mailed something. All of a sudden on the 25th, she couldnt reach him when he didnt show up and find my number.. Likely story. Ugh...
Anyways, they had rescheduled the MRIs with anastesia for September 5th, and now he is in-patient getting chemo.
So... they interupt the 24-hour bag and take him down to MRI. I go home for a few hours to get some stuff and i get back by 10pm.. he was supposed to be done by 9:30. He didnt get upstairs til 11 :( they had to put him all the way under (intibate). Poor Chris had a sore throat for a few days. Anyways... chemo continues and the first spinal is done the next day Sat Sept 6. (this is actually his 2nd spinal, cus he had one in June)
This spinal is done bedside by a fellow and another doctor. They numb you, have you bent over the hospital tray. They poke and get spinal fluid. Then after they retrieve fluid to test, they put some chemo in. Doesnt sound pleasant.
Sept 7th is his last day of chemo. He cannot go home yet because they have to test blood for certain levels.. make sure the green methotrexate chemo is out of his system. Sept 9th he is discharged. He will have to come back in 5 days or so for a 2nd spinal which is pretty typical with this course of chemo. But it will be outpatient

Recovering From Chemo Round 2... other complications

Ok... so Chris is getting better bloodwork-wise. We have a few weeks before Chemo Round 3... but we have to get that finger resolved,,, you know about the finger? or no? Chris had a little tiny bump on his left middle finger for years...

After the first round of chemo it started getting bigger. And then it got bigger and bigger.. literally 3 times the size of his finger. It looked painful and it was painful..

Dr Partridge saw him in the hospital and was ready to biopsy it as soon as his counts were up after Chemo Round 2. After counts start going back up, Chris has terrible tendinitis pain one day. - August 15th to be exact. We go to see Jackie (Dr Strair's right hand woman- Nurse- Bone Marrow Coordinator). They talk to him about admitting him... but it could take days to get MRI scheduled. He does not want to spend the weekend in the hospital just waiting for tests. He gets a quick x-ray. Nothing looks bad... he is better in a day or so. So, Chris has the biopsy done of his finger on August 20th. It comes back non-cancer-- its a pseudo tumor.

Now we have some time to chill at home before Round 3 of chemo starts. Dr Strair calls before Labor Day weekend but they were getting final pathology on the finger biopsy and waiting for rooms to be available.. so We get to stay home for Labor Day weekend.. we go back to the hospital September 3rd. I am attaching photos of his finger that will have to be fixed after Chemo Round 3