That's what I was told when the doctors were talking to me during my first time in the hospital. There were referring to my blood counts crashing, getting a fever and needing to be in the hospital. It happened the night after Christmas. What's isn't a big deal of a fever for most is a huge deal for me... Any fever of 100.4 or higher is the trigger for me. 
So on the 26th I had a lower fever throughout the day, but not above 100. Then around 10 P.M. it jumped to 100.7, checked it again at 11, same thing. Called in to the hospital to talk to the on-call Hem/Onc Doc, they paged him 3 times, no reply (come to find out there was a wrong number with the operator. They obviously don't use 3-way communication!!) So we pack a quick bag, head on up to Cooper. Get there around 1 a.m., check in and get put in a consult room until around 4. Finally in a real room but don't get any visit until I flag someone down after about 45 minutes.... Now we're looking at 4 hours since I got there and about 8 hours since I first had the high fever. I guess they found a way to contact the on-call doc and he saw me around 5:30-6:00. Not long after I was back up on North 9, in the same room I had left a week before.
IV antibiotics and fluids, along with come-and-go fevers for a few days, then it looked like I was going to come home mid-week. But my body wasn't done yet... NOOOO I had to have a random fever once a day, which restarted the "go-home" clock as well a complete new round of blood cultures, urine sample and IV meds.
Physically and mentally I felt like I was on a merry-go-round that had a few broken teeth on the gears - I would be going along great then all of a sudden the gear would slip. It was quite frustrating because all the tests would come back negative. They didn't know why I was sick, but assumed it was viral and just had to run it's course.
All the days started to run together, but somewhere toward the end of the week they decided to do a CT on my chest, which showed a pneumonia on the right side. FINALLY an answer!!  They added another antibiotic and of course more poking and prodding. My arms were (are...) so bruised from all the blood work and IVs... I think it was the night of January 1st that I needed more blood to bring up my red blood cells. not sure if it is a coincidence or not, but after the first unit it felt like all the mucous in my chest loosened at once. Wow did I hack up some ugliness!!
After 4 units of blood, at least 2 units of platelets and more antibiotics than I can count, I was released Sunday. It was incredibly nice to actually be able to REST. The one thing you WILL NOT get in the hospital is rest. Home now, still ridding myself of the last bits of mucous (amazing how such a small bit can cause so much coughing!!) and eating ANYTHING different! 
Consult with the folks at Penn Thursday and the Dr. Ferber Friday. Hopefully I'll have a longer term plan after...

Thanks for all who have stopped by, called, texted, messaged me, have had me in their prayers or just thought about me. Some days are harder than others, but with all of you behind me I know I'll make it!!!

I figured I'd put up a quick update now that "Round 1, Part B" is done. This treatment was more about mental stamina than physical stamina. I really didn't "feel" anything from the chemo, but I could tell by the color of the methotrexate and my urine it was there. The second medication, Cytarabine, I didn't even know it was there except for being woken at 0-God-it's-EARLY to hang it!
The biggest hurdle to getting out this time was the methotrexate level. They want it down pretty low before they spring you, but the nurses say it can be funny at the low levels. I went from 5 to 0.2 Saturday to 0.17 Sunday. Dr. Ferber was the "on-duty" doctor I guess, as he was there Saturday and Sunday. This made me feel a little better as he knows my history and could see me firsthand. He said the number wasn't ideal, but he felt I would be better off at home than sitting around the hospital. THANK YOU!!!! If you saw my FB post, he said it is important I eat and drink while at home. I told him I'd eat and drink BETTER at home than I EVER would in the hospital! The food isn't bad, but you get A cheeseburger... I tried to finagle swapping my sides for a hotdog... NOPE. Lisa had a wonderful baked ziti waiting to go in the oven when we got home, 2 & 1/2 pieces later - YUMMO!!
So now I have to keep up on the meds to rid the methotrexate and keep my pH level where it needs to be and stay away from sickies, but I am HOME!!!

Thank you to all who called, texted came to visit or just had me in your thoughts and prayers. I really do appreciate everything and all of you!!!

Be Safe, Be Prepared and God Bless!!

​For those who didn’t see the Facebook pictures, last week my hair decided to revolt from the first batch of chemo.  The shower looked like a flooded barber shop and my head looked like I fell asleep first at a party and someone had a razor – random patches of missing hair. So I got out the clippers and took care of it!! But the mustache!!  For only the third time I can remember since freshman year of high school the ‘stache is gone! Such is life… So now I have to get used to shaving my face AND head and not grabbing the shampoo, just washing my bumpy dome.
Yesterday was a regular check-up with Dr. Ferber.  It was a relatively quick visit but he had good news – my blood counts are back up to normal level instead of being below as they were when I started this trek! Awesome news!! He also said he was at a conference in Florida and tracked down the doctor from HUP to talk about my case. The HUP doc said I have an appointment with them but he didn’t have his schedule with him.  So I’m not sure if it’s the appointment I already have scheduled for next month or if I have an earlier one I don’t know of!
Then he said he wanted to get on with Part 1B and asked “can you go tomorrow”? Uh… I guess…
So here I am one room over from last time after spending a better part of the daytime in the CDU (I think it’s the Can’t Decide what to do with you Unit). They put the PICC line in while was downstairs but no meds. Finally got up here around 3, got settled in and now I am hooked up to Igor the IV pole for my visit. This time I made up some shirts with snaps on the side so I can change them if I sweat during the night. I looked online and found some but none for long-term IV, so I got a bunch from Formal Mills, snaps from Wally-World and made my own! I’m going to have to make more for next time because they are going to put the PICC in the left arm.
They can’t say how long I am going to be here this time because it depends on how long it takes for my body to get rid of the one medication, Methotrexate. The levels have to come down to a certain point and then I can get the other medication. The fun part is I have to give a urine sample every 4 hours along with vitals. They have to keep an eye on my pH because the Methotrexate will mess with it and they have to give me meds to balance it, so I have some cups ready to go.
Thanks again for all the thoughts and prayers!

Thanksgiving was nice. The immediate family were all at my parents, we ate well, laughed, shared, went around opening the windows my parents closed…. The usual family gathering!!
It was great to actually have an appetite for a change! I kept it simple, turkey, mashed p’turds, corn, ham and of course cranberry jelly. Even went for seconds on turkey and HAD to compare the Black Forest Ham to the regular ham (Black Forest is better). Topped it off with a piece of apple pie. When we got home I still had the munchies and finished off the Buffalo Chicken dip and a few hunks of cheese with crackers.
Friday we went to see Dr. Ferber. His assistant/Nurse Practitioner Faith saw me first. She asked a whole slew of questions regarding how I was feeling, experiencing, etc. The she checked for lymph nodes. She dug around my left armpit so deep I thought she was going to touch my ear! She said it was a good thing that she couldn’t find them anymore. She also checked my spleen, and had a hard time palpating it where *I* could outline it before. Dr. Ferber asked a few more questions and also felt for the spleen and agreed it was WAY smaller than before. He said that is an indication I am responding positively to the treatment!!!! YAHOO
After discussing Wednesday’s events. he felt it more me not being in a physical condition to get the treatment and not a reaction to the medication. I tend to agree, after all . the only thing I did was sleep and pee from the time I got of the hospital until I went for the treatment. He walked to the infusion center next door and set me up for 0830 Monday morning. He said he would be in the Voorhees  office Monday, too, and would check in on me before they started the meds.
Sunday I was showering and remembering why my armpit still hurt when I realized the lump I had on my neck was almost impossible to detect. Another YAHOO. I was ready to dance! I don’t want to put the cart before the horse, but these are some pretty awesome positive signs.
My daughter Robyn went with me today for the Rituxan for support, company and backup. They started with a liter bag of fluids and Dr. Ferber stopped in just as it was time to start the Rituxan. He made sure I was good to go and the drip was started. They started it slowly tin case I had a reaction, but it was an uneventful, boring day. Finally got done around 3pm.
So now I need to keep an eye on my temperature and go for blood tests once a week to keep an eye on my counts. The next appointment it December 14th, unless my numbers change indicating I need meds for an infection or I am ready sooner for the “B” part of this round.
I am so very thankful for all the people who have offered to help, even if it was someone to talk to, a ride, or “anything you need”. Thank you all!!!
For those interested in becoming a Stem cell/Bone Marrow Donor, here is link you can use to signup: Swab-A-Cheek

Well, the last few days of Chemo were uneventful. Not much besides being bored, walking the floor and being bored. It was nice to see Eric Ulrich and my niece Vicki and my dad come visit. About the only excitement was the PICC line not wanting to clot right away after they took it out when I went to shower.  I don’t know if it was the lack of sleep, the meds, or a combination of both, but I was wiped out when I got home. Monday night and all of Tuesday was mostly sleep and pee, sleep and pee…. I had zero appetite, but I tried to force myself to eat and drink. Apparently not enough.

Wednesday was a different story. I had a 10:30 appointment for “an injection” at the Voorhees center. Mother nature decided I was going to be a little late and I thought since it’s just an “injection” I can get something to eat after…  Well I walk in and get directed to a chair, settle in and after a few minutes one of the nurses comes up to explain I am getting an INFUSION along with the injection! They have to give me pre-meds to help avoid the side effects and I’ll be there about 6 hours. This would have been REALLY nice to know BEFORE I walked in. So I went down to the little food kiosk the have and got a cinnamon bun and a chocolate milk, then back up to the room. They give me the pre-meds and start the infusion. Because they know it can have side effects, they slowly increase the rate at which it is given. That’s what, 3 red flags now???
Things are going along ok and they up the rate at least once, maybe twice. Then I tried to get comfortable about the same time as another rate increase. My stomach sloshed and gurgled, I got the chills and nauseous and let them know. they gave me another anti-nausea med, but that didn’t have time to work because it was time to lose breakfast. after I cleaned out my stomach, I felt fuzzy and still cold. They ran vitals and my BP crashed to 77/40 and my pulse Ox was around 90 and pulse of about 60. My color could be described as “sheet”. As my friend Randy asked “white as sheet, oh sheet or brown sheet?”… all of the above! I went white as a sheet (so did the nurses), the nurses went “OH SHEET”, then the sheet was brown from me not making the vomit bag. They stopped all the meds, pushed fluids and the doc said to call for an ambulance. Fortunately one of the docs there yesterday was also one who saw me in the hospital, so we had a little continuity there. 

So I got a ride with Tom and Jason from Voorhees FD and Linda from the Medics to Cooper. The wanted Cooper in case I was going to be admitted. Sorry, guys, for that ride on the day before Thanksgiving. There was a lot of traffic and NO easy way to get there. Once in the hospital they gave more fluids and monitored, my numbers came way up, back to normal and I was released. 
Had some spaghetti and meatballs last night with a PowerAid, felt good to get solid food!
I already had an appointment scheduled with Dr. Ferber Friday morning so I guess we will regroup and see if it was just dehydration, a reaction to the med or what he thinks and where we will go from here.

Today I had coffee and a breakfast sandwich and a chicken sandwich for lunch, took the dogs out for a walk and some fresh air. Hope to see the family for dinner tonight.​

Happy Thanksgiving everyone!!!

I'm still going!

Pretty good day today, last two doses if the first medication today, final dose will be around 0400 Sunday morning, then medication 3 Sunday and 4 Monday.

Last night was a bit odd, tried out the hospital's CPAP... would have been better in a cot on the tarmac at PHL!!!  WOW was that thing LOUD!! Lasted about 10 minutes, that was done! Lisa and Trish came up today and brought my laptop and MY CPAP. I also couldn't unwind enough to sleep last night. Between the every 4-hour vital checks, med changes, Igor acting up and my mind all over the place, I finally asked for something around 2. They gave me benadryl... I felt it, tasted it, saw the fireworks, got groggy then got wired! I felt like I had been up for 24 hours tired but wired like I was drinking coffee the whole time PING PING PING. After about a half-hour I wound down enough to fall asleep. 

Side effects are being managed well, no nausea/vomiting/acid reflux BUT *I* would get the odd-ball side effect from the Pepcid of random hiccups!!  3 HOUR bout last night!! UGH!! But I'll deal with them over the reflux. Not as bad today, comes and goes. 

As I mentioned, Lisa and Trish came up and brought the computer, CPAP and some munchies!!  I got freed from Igor for about 2 hours today so the ladies ran down for coffee and snacks while i de-funkified myself. Robyn and AJ stopped up too. Jeff and Abby were planning on coming but Jeff got tied up at work and Abby had an early party. They'll be up tomorrow. Lisa and Trish left to hit the new outlets, no shocker there!!

It was quite a surprise to see Pastor Steve and Christine Shuster walk in!!  We had a very nice visit and it certainly can't hurt to share a prayer with the Pastor!!!

Robyn brought up an old scrub shirt and we personalized Igor. We found that unbeknownst to us when we named him, there is a Doctor here named Igor and he is tall and thin!! The staff all laughs when they find out! 

The food service has come a LONG way from what I've known! I have a restaurant-style menu to choose from, call down and order up what I want for when I want! And it actually tastes good! French Toast and sausage this morning, cheesesteak for lunch and roast prok, mashed and broccoli, chocolate cake for dinner!!  

I have a reservation...

I wasn't up to writing last night, had a lot going on and just wanted to unwind.

Lisa and Robyn came up with me and stayed until about lunchtime. They both chuckled when I walked into admissions and said "Hello, I have a reservation". So did the lady working there! She checked me in, had me sign the required "you can't sue us" forms, gave us our passes and directed us to the elevators.  
We find our way to the 9th floor and were directed to the room. My nurse came in and introduced herself, gave me the rundown for the day and not too much longer the doctor came in. My doctor comes in once in a while, be he and the hospital docs are always in contact for any questions or issues. The doctor said I would need a PICC put in, then an echocardiogram just for baseline. The PICC was put in in the room, relatively painless (the lidocaine still burns like a bitch!) and now I have two extra holes in my arm. They didn't initially mention it, but they did a chest X-ray to ensure the PICC was in the right place. Lisa and Robyn left after the PICC line folks came in, Lisa had to work in the afternoon anyway.

Anyone who works in a place that has central control HVAC can relate to the fact that my room was a sauna because it's heat season, 60-some degrees outside and the room faces east... They eventually dug up a lifesaver - a fan!!! And I understand the reason for the vinyl chairs, but when you can't do much but sit, they suck! I thought the soaking sweats were only at night until I spent an hour in one of these chairs!
The echocardiogram was nice to get out for a while and Robyn came back and we had dinner. The pharmacist stopped to see if I had any questions, he answered a few and I'm sure I'll have more for the next time.

I guess it was around 4 when they hooked up the IV and got some fluid flowing, then the pre-mess the help avoid side effects. At 5 the first dose of chemo started, which was a 2 hour drip. About halfway through I got a fuzzy head, but was told that is normal. Somewhere along the line I got the steroids, too. Of course they need to do vitals every 4 hours... Ugh!
After Robyn left, I just chilled and watched some tv, answered some texts and FB messages and waited for the midnight vital check. Robyn and I named the IV pole/pump Igor, Igor the IV pole. Well Igor was a bad boy last night... He woke me up about every hour form one o'clock on... Of course I was just settling in when the first alarm went off! The different med modules were taking turns going off. Thankfully nothing serious, just flow alerts. Vital check again at 4.... Next round of chemo at 5... Screw it, I'm up now!!! No chemo drunk buzz this time.

I have to say that everyone here is very nice and very accommodating. Always asking if you are ok and if you need anything (the fan...). 

A lot of people have been asking if the can do anything. They figure at some point, but don't know when, I will need blood and or platelets. One thing you can do is give blood. I wholly agree the ARC "appointment " process is a pain in the ass, but that doesn't lessen the need for blood. Another thing is the register with the marrow banks. The nurse said they send you a swab, you swab your cheek and send it back. May I'll get yours, maybe your a match for some other firefighter, police officer, nurse, EMT, but should it really matter? I'll try to get some links posted, but I know you can find blood donations sites on the ARC site.

Thanks for all the thoughts and prayers, I really appreciate all of them and all of you!

Be safe, be prepared and God Bless!
​

Got the call this afternoon, be at Cooper Hospital Thursday at 8 a.m.

Then the 5 days of treatment, a post-treatment injection on the 25th and a follow-up visit in the 27th.

About 3 weeks later, start all over again!

Thanks for all the thoughts and prayers, knowing you are all behind me is a big mental booster!!

On the highway of life, this is just a flat tire... I'm going to fix it and keep rolling!!!

I had “flu symptoms” over the weekend – chills, random sweats, muscle and joint aches, headaches. So Monday morning I called the Hemo/Onc doctor’s office to see I should be calling them or my regular doctor. They said come in to be seen.
 
In the office the medical assistant goes through all the work up, no fever, BP is a little low… Asks all the “flu” questions – Yes is the answer to almost all of them. This gets me a jam-fancy mask to cover my mouth and nose. Difficulty breathing? Not until I put this mask on…
 
Doctor Ferber comes in, does his exam, asks a few more questions, poke, prod, listen to my lungs, the whole routine.
 
Then we talk.
He says with my white blood cell count already being low, if it is the flu I would need IV antibiotics. And there is involvement of the bone marrow but he hasn’t gotten the full report back yet. But the symptoms also match the lymphoma being more active too. He tells me he has been calling his contact at Penn every day but he hasn’t called him back. “I don’t want to wait any longer. I want to start treatment now before you get sicker and we have a bigger problem”. He said he was going to call Penn one more time and he was calling Jefferson too.
 
He said he was giving me scripts for blood work to see where my counts are and that he was going to call the hospital to set up admission…
 
I asked, “When would I go to the hospital?”
“Usually about 8 o’clock”.
“No, like what day, next week?”
“Probably Wednesday or Thursday”
“Uh… oh, ok….”
I’m sure the mask hid the shocked look on my face!!!
“You had originally said I could wait until after Thanksgiving”.
“I don’t want to wait that long and you get sicker”.
 
He is going to start treatment using the “recipe” he knows shouldn’t interfere with a stem cell transplant. He said there are other recipes, but they sometimes affect the options for stem cell transplant and that this one is a proven formula. So it looks like it will be hyper-CVAD, which requires a 5-day hospital stay, about 3 weeks at home and back in for another 5 days for the “B” part of the recipe. Not exactly sure how many cycles of this yet, but they were talking about 4 cycles originally. I guess the SCT folks may want to adjust that.
 
He also advised me that if I get any sicker, or have a fever of 100.4 or higher IMMEDIATELY go to the hospital and have them call him. He even gave me his CELL NUMBER in case the regular Cooper number didn’t get him!

I went first thing this morning for the blood tests and now I wait for "the call".