May 31 Day +1

Liquid Nitrogen for Stem Cell Transport

Day one after the stem cell transplant.

Yesterday was hard. My job was to just lay on my back in bed while the nurses pumped stem cells into me. But, it took a lot out of me. I did some serious napping when they were done and felt a serious lack of energy. I slept pretty well last night also, despite the hourly pee breaks and the every four hour vitals checks. I was a bit nauseous through the night but have an aroma therapy called Quese|Ease that makes it bearable without medications. I had no appetite yesterday and not much today.

Today I woke feeling pretty blah. My white and red cell counts are down but not out and my hemoglobin is hanging in there. But, I have little energy. Yogurt was about all I could handle for breakfast and a glass of orange juice.

I have been up and walking and the physical therapist made me march in place and stand up from my chair without using my arms - good exercise for the thighs. Other than that I have had a very low key day because I just don't have a lot of energy.

Sharon is here now and it is good to have her company. (Ask her about how I smell. The preservative used on the stem cells causes a distinctive body odor.) She massaged my hands and arms and they feel good! Not much else to report. Hang around the room and wait for my stem cells to find their way back into my bone marrow and start producing. This is a very strange process.

 

Stem Cells Going In

Stem Cells Before Thawing

 

 

Birthday?

Here in the BMT area they call this my birthday because I get my stem cells back today. Kind of lame but they are into it. They will sing and I will play on my ukulele. 

I have an app on my iPad which lets me track most everything here from my schedule to my test results. It is very useful for me.

 

I'll be hooked up to monitors today and they'll be checking me locally and remotely. The stem cells go in just like a transfusion with lots of additional fluids. The primary reason for the monitoring is if I have a reaction to the preservative used in the stem cells. I am starting this procedure felling tired. My energy levels are down and I have dozed. I've also got a bit of a queasy tummy. I've been using an aroma therapy and drinking Coca-Cola. 

 

Memorial Day Day -1

Today is the day they kill off my bone marrow. I had my dose of melphalan and this one was a kick in the rear. It took a lot of of my energy level but I think I am coming back a little now. The chemo was started about 11:00 a.m. and it is now 3:00 p.m. Earlier I had some mile nausea which was controlled with some aroma therapy and Coca-Cola. Now I am just a bit tired and I have an uptick of of neuropathy. I had to keep my mouth cold with Italian Ice, ice water, cold Coke because this chemo causes mouth sores. Mostly today I have napped and listened to music and spent time with my sweetie who has been here most of the day.

The sun vanished and we have showers now. I would rather see sun - and it does seem to be reappearing in the west.

   

 

Sunday. Day -2.

I slept well last night. I suppose I am getting used to the bed and the constant interruptions. Bottom line, I am resting. Climbed out of bed a round 7:00 a.m. and enjoyed a cortado, ordered breakfast and got my day going. It is now 11:30 a.m. and I am watching the Indy 500, have had a nap, taken a couple of walks, been strumming my ukulele, getting chemo, and blogging. Plenty do do so far and I am not yet stir crazy.

My nurse today is Rocco, a fellow Texan. Nice guy and a testicular cancer survivor. He goes on vacation in three days - southern Italy and Sicily with his family. His mother is from Italy. He is interesting to talk to.

Not much else to report so far today . Scattered light clouds outside with a nice clean view of downtown Denver and Pikes Peak. To bad I couldn't have reserved a room on the west side of the building with views of the entire front range. But, you get what you get and you don't throw a fit. At least it has been sunny out there today.

I have had a good day today. Partly because of visitors. Sharon and Larry and Dave and Chris and Amanda. They all kept me talking and thinking and enjoying myself. I watched most of the Indy 500 and that was entertaining. Pizza for lunch and it was tasty. Now it is ABC news and blogging. Also took a number of walks today, down the hall, back up the hall, around the corner, around another corner to the end of the hall, and then back, repeat. Sounds pretty exciting doesn't it!

Tonight is my last night of cytarabine and etoposide. Tomorrow I get the last and likely the worst of my chemo - melphalan. Then onto my stem cell transplant on Tuesday. I put in an order with Sharon for some Winchell's doughnuts tomorrow. I've been craving them for a while. Nick and I got some when he was here at Christmas, they were pretty good.

I'm going to try something new for dinner tonight - baked chicken strips. I've been afraid of them but Larry says to order lots of Ranch dressing and it will be fine. And, he suggests stocking up on Ranch so I've got some in reserve for other meal failures. I will report later!

Cocktail hour tonight was a single espresso shot. It was satisfying but not bourbon. My dry spell will continue until my Neutropenia is finished. A month?

Percy Still At Work

 

Ukulele and Percy

 

Lunch Pizza - Not Bad

Party at the Jordans!

 

Saturday May 27, 2017 - Day -3

Uneventful night. The usual vitals, meds, etc. Nurse Sara loaded Percy up with Chemo around 10:30 to 11:00 and I took them in until around 2:00 a.m. No reactions and I slept pretty well considering. Sara woke me at 4:00 a.m to draw blood and take vitals. Everything seems normal. Not much else to report this morning, I had breakfast and showered and went for a walk. Now I'm just sitting looking out the window, typing, and listening to Pandora. I had an Ativan this morning so I am pretty mellow.

Not much diversion around here. Thankfully Sharon and Larry and Dave came to visit again. Other than that, I read, I nap, I measure and write down my urine production, I listen to music, I have my vitals taken, I take pills, I wall the hallway pushing Percy, I watch videos (today Jason Bourne on HBO Go), I read the news I watch the news, I play my ukulele, I sit and stare. Stir crazy. At 5:00 p.m. I decided I wanted a cocktail, I poured myself a coke. This is my fifth day here and I will be bonkers before I leave. I think our original target was the 12th of June, but hoping for the 10th. The MyChart Bedside app tells me I might leave in twelve days on the 8th. It all depends on how my red and white blood cells recover after the transplant. I will be glad to leave, even a week at the Homewood Suites will be better than this. 

It has been cloudy outside most of the day and somewhat dreary. I prefer it when sun is coming into the room and there is variety in the clouds outside. I want to be outside.

I continue to work my way through the menu here. You can put together quite a variety of meals. I continue to have an appetite and I am determined to stay as healthy as I can. One thing I have ordered repeatedly is the Caesar side salad with Caesar dressing. It is a nice little salad. For lunch today I had a bean burrito with a bowl of fruit. That worked. Tonight I have ordered linguini with Bolognese and a side of steamed spinach. We will see what shows up. The last time I ordered spinach I got mushrooms. 

 

 

Day -4

Good morning lurkers! Here I am in room 1126 on Day -4 in my stem cell transplant saga. Last night was the first of my four nights of chemo. Getting chemo every 12 hours is not my idea of fun. I was able to dose for a bit before the chemo started and then  again after midnight to about 2:00 a.m. then until about 4:00 a.m. when the nurse checks vitals again and draws blood. I awoke around 5:30 a.m. and then got up about 7:00 a.m. Not easy sleep but I feel rested. At 7:00 a.m. I had a cortado and ordered breakfast and read news online and watched on TV. I am really enjoying my Nespresso Pixie here. I don't have to wait for and drink "office"coffee and can have it anytime I want. I don't get hot milk, but if I ask them to get it for me early enough the chill is off when I use it. Nurses gave me a lot of pills and checked my vitals around 7:00 a.m. Pretty exciting stuff isn't it. I have not left the room yet but have walked around the room in circles and taken a shower. I am ready for a new day.

 

We had thunder storms last night with a light show in the skies. The lightning was as close as a quarter mile and the thunder was loud. Sunny skies today with just a few clouds. We are supposed to have more thunderstorms this afternoon. I believe this is pretty typical late spring early summer weather here. Next Friday will mark our first anniversary here in Colorado. I've got to say I am not missing the Chicago area. Yes, the people but not the weather, traffic, politics, property taxes, and yard work.

 

Sharon modified some t-shirts for me with a slit down the right front and snaps to pull it together. All of the nurses have been impressed with them. One suggested that Sharon should sell them on Etsy. 

 

Listening to Pandora again. This morning it is Hawaiian music. Mellow. Chemo is due to start any minute. Just waiting on the bags, Here the are!

 

This afternoon Sharon, Larry, and Dave came to visit. It was good seeing the boys and I am so glad they came here to help Sharon while I am cooped up. They are good friends.

 

Chemo was uneventful, no side effects except lots of trips to the toilet to pee.

 

Fish taco for lunch. They were good. I'll have them again. It is time to order dinner and I don't know what to have.            

Denver and Pikes Peak

 

 

Cortado and News

l

Pot roast, mac and cheese, asparagus

     

Day -5

Percy and I slept pretty well last night, though he woke me up beeping twice. The second tim  I couldn't find the phone for a few minutes to call the nurse. Other than that, we did OK hooked to each other and I slept pretty well. Nurse Kelly made a name tag for Percy.

Breakfast this morning was a burrito with extra salsa. It was pretty good. I also had plain Greek yogurt and mixed berries. A nice breakfast. They did forget my breakfast potatoes. Last night I ordered grilled chicken, spinach, mashed potatoes, extra salt and pepper, and cheesecake with a side of strawberries and Earl Gray tea. The chicken was un-sauced and dry. The spinach was mushrooms, no extra salt or pepper. I won't be ordering the grilled chicken again.

I walked on the treadmill for 10 minutes this morning and did a few walking laps around the unit. A photo tour will follow.

The only side effects from yesterday's chemo was some facial flush and hard stools this morning. Otherwise I tolerated the carmustine well. Today starts my twice a day chemo - 11:00 a.m. and 11:00 p.m. I will be getting cytarabine and etoposide.

That's all for now. I'm gonna practice my ukulele for a while. Here are some pictures to keep you busy.

8:50 p.m. Update

The day went well. I've had my first chemo treatment and it went well. The next one is at 11:00 p.m. I walked the loop through the unit multiple times, practiced ukulele, read e-mails and text messages and other things to keep busy. My vitals get checked every four hours and they give me meds and write down my urine output. The high point was Sharon joining me the evening for dinner. She will be here until around 8:30 p.m. when she heads to the airport to pick up Larry and Dave.

 

 

 

 

     

 

Day 2 or Day -6

Day 1 or Day -7 down. Now Day 2 or Day -6. The staff here counts down from your first day here until your "Birthday" or the day I get my stem cells back. 

Last night was tough for sleeping. The bed is not comfortable at all and it automatically inflates and deflates and takes some getting used to. It was lights out for me around 9:30 p.m. But I mostly tossed and turned until midnight. After that I slept for about an hour, got up to pee, and slept for about an hour until I finally got up at 7:00 a.m. And ordered breakfast. I brought my Nespresso with me and had a couple of cortados. A touch of home.

I've had visits today from room service, a dietician, an occupational therapist, nurses, nurses assistant, housekeeper, a doctor, and who knows who else! I start my next chemo around 11:00 - carmustine. To prepare me for the carmustine, they are filling me with saline, and a steroid and anti-nausea meds via I.V. and oral Ativan. 

I've done a few laps around the unit. Pretty darn exciting and about the most exercise I will get here. They do have a couple of stationary bicycles and a treadmill so there are options.

Sharon is here now. I finished my chemo for the day and had a nice lunch - salad, sandwich, chips, ice cream. I 'm drinking lots of water and iced tea. Sharon is putting snaps on "cancer" t-shirts. Cut down the side so the nurses have access to the ports. They look pretty good. Sharon took care of herself today with some house cleaning, sewing, and lunch with friends. She brought me two Mexican Cokes! A treat because I enjoying having one once in a while over ice. Only Pepsi products offered here. She also brought my ukulele so I could practice. This has been an easy day. No nausea which was the predicted major side effect. My head did get hot and my mouth tingly. Neither one was one the list of side effects and no one got excited. They are still pumping saline in and I am drinking water, ice tea, and Coke. Needless to say I spend a fair amount of time heading the the toilet, dragging my buddy with me. My buddy needs a name. I'm thinking Percy Pump. What do you think?

For the next four days I will get two chemo agents twice a day - at 11:00 a.m. and 11:00 p.m. I'll let you know how it goes. Keep those texts and e-mails coming!

 

Pikes Peak

 

Into the Bone Marrow Transplant Unit!

I have checked into my room in the Bone Marrow Transplant Unit at the University of Colorado Hospital in Aurora. Things are moving slowly. They took me for a chest x-ray and they have drawn blood and asked a kazillion questions. Sharon and I ordered lunch and are waiting. They have ordered my daily chemo and we are waiting. There is much waiting to be done here. 

Room with a view

 

The nurses will check my vital signs every four hours around the clock and will draw blood twice a day at 4:00 p.m. And 4:00 a.m. My nights will be so restful! Wake me at midnight and then at 4:00 a.m. This on top of the chemo which they tell me will be during the day, I will be hooked up to and I.V. around the clock. The I.V. pole will become my best friend and will be with me when I use the toilet, shower, lay in bed, sit...

Lunch was delightful, not. I did learn that if you want salt or pepper or anything other than utensils, you have to order it. 

Here is an exciting Room Tour for your enjoyment. This is where I will be for the next three weeks!  At about 3:00 p.m. My chemo finally started - rituxin - which is the immuno therapy drug and not technically chemo. It cost about $20,000 for a little bag, the one at the top of my buddy pole. I wonder how much Medicare will be billed for this entire process? As I have said before, poor people cannot afford to have cancer and get it treated. If I were not on Medicare and pay for a supplement, this could be a huge financial burden.  

Colby and his new buddy.

 

Snow?

We were surprised this week with a late spring snow storm in Colorado. On Wednesday I was driving the Camaro with the top down and on Thursday I was driving the Jeep in snow. Quite a change in the weather. 

Last weekend we planted annuals and perennials in pots and in the ground. Before that Sharon filled her self watering tomato planters with tomatoes and we had herbs in pots on front and in back. Thursday morning Sharon was covering all of them with buckets and pots and wrapped the tomato planters with a tarp. Now on Friday the snow is finished and is melting. By tomorrow afternoon all of the snow will be gone.

We had a delicious and fun dinner on Tuesday this week at Via Perla in Boulder. Joan, Chuck, Judy, Chris, Amanda and the Jordans. We will go back to this restaurant. On Wednesday we met our neighbors Leslie and Jerry for happy hour at Comida - one of our regular haunts.

 

Between Boulder and Longmont

The Normally Empty Gulch

Yellow Headed Blackbirds

Kitties in Winter Mode

 

One Week To Go

This morning we made a trip to UCHealth in Aurora for a bandage change, easy peasy. One week with the trifusion line down. This time next week I will be in the transplant unit and likely hooked up to an IV and getting an infusion of rituximab and then on to five more days of chemo. 

Sharon is making plans and lists of what we need to take with us - clothing, meds, coffee, but no bourbon Larry. We are getting things done and out of the way before I go in. This weekend we visited a nursery to get plants for the yard, both for pots and to put in the ground. We worked on planting them on Sunday and more on Monday. On Monday and Tuesday I worked on adding more drip irrigation lines and confirmed that the ones in place were working as expected. I do like using drip irrigation, especially in the hot dry summer climate we have here in Colorado. Of course after all of our work in the yard, the weather forecast now calls for temps in the low 30s and snow Thursday night into Friday.

This weekend L.C. got out twice and ran Sharon all over the green belt before being caught. On one of those occasions she managed to open the screen door by herself and let herself and Shelby out. He was easy to catch, I just opened the back door to the garage and he walked in. L.C. is not easy to catch, she toys with us.

Have I talked about the trifusion line? I was anxious about getting it and anxious about sleeping with it. It turns out is is less intrusive than I thought. Yes, I have to be aware of it when moving about and when sleeping but I think it has now become a part of me. I do have to keep it and the dressing dry which means that I have to put cling wrap over my shoulder to protect it when showering (that will be fun starting next week when I will be plugged into an IV while I am showering.) I wear a button front shirt daily so that it is easy for Sharon to get to the lines when she does the daily heparin flush and a t-shirt at night to control the lines.

Want more information on trifusion lines? Look here. (Larry P., don't look!)

We have been doing things with friends and by ourselves to spend enjoyable time together before the stem cell transplant. Lunch at Aloy Thai, wine and cheese on the patio, a dinner at Comida, dinner tonight at Via Perla in Boulder with friends, happy hour tomorrow night at Comida with other friends. My last taste of freedom!

I am continually appalled at The Donald's appetite for chaos. I don't want to read of his foibles, but can't help myself from watching the sinking ship. I worry about what the rest of the world thinks of his antics. 

Nurse Sharon preparing fro a heparin flush.

We now have multiple medical supplies at home.

Sharon plants while I drink rosé.

The kitties watch me. My red chair in the background.

A squirrel entertains the kitties.

     

 

 

The Day After

The day after Apheresis...

Sharon dropped me off at home after 4:00pm and did some shopping for dinner and drugs for me. She made a delicious deep dish pizza with prosciutto. With that and several glasses of wine in me I was done early! I went upstairs, took an Ativan and was quickly out. I do not remember Sharon coming to bed.

Today I am still experiencing a bit of bone pain from the Neupogen and Mozobil injections and discomfort from the incisions and tunneling for the catheter but am otherwise doing fine. It is rainy, dreary, and chilly outside so today will be spent indoors. This morning Sharon did her first Heparin flush of my catheter and it went well. I was probably more nervous than she was. I am just relieved that Monday and Tuesday are done and neither day was as bad as I had anticipated.

In 14 days I am admitted to the hospital and begin a new round of chemo.

This is my second bout with cancer. After my chemo for Hodgkins lymphoma in 2010 and the "all clear" I thought I was done with cancer. But then three years later getting told I now had indolent follicular lymphoma told me I would never be cancer free. Then this year with that indolent follicular lymphoma busting out into what I have now - diffuse large B-cell lymphoma. I find that I am jealous of other cancer "survivors" who claim to be in remission or cured and yet here I am continuing down the cancer path. My mother did the same thing through much of her life. I suppose we just have to struggle through. It is depressing and I don't like what I have to go through. Seven years ago I thought I would never have to go through chemo again, but now I have finished four cycles of R-CEOP and am looking at going through R-BEAM and then a stem cell transplant. Shit.

When I hear people say "it's not fair" I usually think "No one ever said life was fair." Now I'm thinking, "Damn, it is not fair." But then remind myself there were no guarantees.

Counting Down

Dessert at Black Cat, Boulder

Two hard days down. On Monday I had a trifusion line placed in my right chest. Officially a tunneled trifusion catheter. I was fearing this procedure, and the aftermath. It went better than I feared and I have survived. I was wheeled into a surgery room, hopped on a table, and they gave me Versed and Fentanyl which kept me conscious but happy. I was concerned initially because the drugs were not dripping and it appeared that my IV had pinched closed (It did take three tries to start an IV - my veins are all in hiding after chemo.) They forced it through and all was ok. They told me afterward that I did snore a bit. I only felt some pressure as they did their deeds. 

Afterwards Sharon and I went to the local Homewood Suites, checked in, got some dinner and then retired. I took Tylenol and an Ativan and was able to sleep. The incisions and tunneling from the catheter insertion were sore and the Ativan certainly helped me sleep. Below is an image of what they did to me, and perhaps because of the drugs, I am smiling. Oh, also on Monday I received another dose of Neupogen and then later in the day a Mozobil injection. I had Neupogen injections on Friday, Saturday, and Sunday. The latest ensure I have plenty of white blood cells and the Mozobil helps release stem cells from by bone marrow to my blood.

Early Tuesday morning we headed to the hospital again. This time for the apheresis. I was very nervous about this procedure but my nurse Neil was very calming and affirming. Our target today was to collect 10 million stem cells. The original estimate was that they would cycle my blood through the machine four times and hope to collect just over 9 million stem cells. Early on they determined that I was producing better than expected and could cut down to three cycles through the machine. And, at the end of the day I had produced and they had collected 10.43 million stem cells. As a result, I was finished sooner than expected and was able to be disconnected. The process was not uncomfortable but I remained somewhat anxious throughout. We are now home and I have rested and had a couple of glasses of wine so I am feeling better. The catheter insertion area is still tender and will remain so for a few days. Sharon has to add Heparin to my lines every day and I get the dressing changed next week. 

 

I will have this catheter for about 60 days - with Heparin flushes daily and dressing changes weekly. Two weeks from today I will be admitted to the hospital, go through R-BEAM chemo, and then get my stem cells back. After about three weeks in hospital I will be released to the Homewood Suites for a week and then home. My target date to getting back home is June 19.

Preparing for Apheresis

The Apherisis Machine

Blood Going In And Out

Stem Cell Collection Bag

Transplant Is A Go

We are just back from a trip to the hospital for blood tests and a visit with Dr. Kamdar. She reports that my blood tests look good, my bone marrow biopsy came out clean and my PET scan indicated I had about a total of about an 85% reduction in tumor size as a result of my four cycles of chemo. Pretty much all that is left is in my upper abdomen. And because of of all of these and signing a consent form, I am a go for the stem cell transplant. Whoopee.

We visited the bone marrow transplant area of the hospital today. It was pretty utilitarian looking. We were hoping for something a bit homier and more comfortable looking. What we have is a big room with pretty big windows, a typical hospital bed, a side table, a sleeper sofa, and a recliner. None of them look very appealing. The unit does have a couple of stationary bicycles and a treadmill for exercise. I can walk around the unit but not go outside into other areas of the hospital. I will be attached to a rolling IV stand most of the time I am there. Goody goody! Everywhere I go, I will be pushing an IV - shit, shower, and shave with an IV plugged into my trifusion line. Can you tell I am thrilled with this? About three weeks in this room.

I am resigned to this and just want to get it over. I am certainly nervous but I have to do it. I am feeling pretty darn good right now and am confident that I can deal with this procedure. The days of chemo and the chemo they will pump into me are intense but is only for six days. Then we are done.  Of course the chemo will kill any remaining cancer cells plus all of my stem cells and bone marrow and who knows what else. But, I only get it for six days. Then I get my stem cells back and they will do transfusions to help deal with the neutropenia. Then about twelve more days in that hospital room.

The best news I got from Dr. Kamdar was that the trifusion line would likely come out around day 30. I was concerned I would be dealing with it for three to six months. 

Update May 3 - on Friday, Saturday, and Sunday we will be driving to UCHealth in Aurora for Neupogen injections to stimulate white blood cell growth. If I were not getting these in hospital, I would have paid between $3,500 and $5,000 out of pocket to self administer. Driving 100 miles round trip and paying about $11.80 in tolls is cheap.