Going home: day +12

Posted on November 23, 2014 by Robert I Baxter

Today is Sunday, November 23, 2014. After spending 20 days in the hospital for a stem cell transplant where I received my own stem cells, I am finally going to go home. It has been a battle that has included boredom, pain, boredom, joy, learning, boredom, and so many other aspects.

When the doctors walked in this morning, I pulled out my monopoly get out of jail free card. Okay, so maybe I don’t have an actual get out of jail free card on me, but I told them I wanted to cash mine in. They chuckled and said I get to go home today. Music to my ears. Here is a picture of the medical staff taking a selfie with me this morning.

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I have exceeded all expectations so far. My blood counts are returning to normal. Well, maybe not normal, but they are mending quickly. I received platelets this morning. I’ve received blood products almost every day since day +2.

I will put together a video in the next day or two showing the last few days of my time here at the hospital. Most of it was spent laying in the bed. I felt terrible. The chemo does many mean things to the human body. There wasn’t much to show on video. Honestly, I didn’t feel good enough to make any videos.

If you are following me on wordpress.com, be sure to visit my webpage at http://www.kraftsims.com to get links to my Flickr page and a link to my YouTube channel. I’ve documented much of my chemotherapy and stem cell transplant on video.

Today is a special day for me. I am feeling many emotions of gratitude and happiness just at the thought of going home. This has been a difficult battle, one that is worth it. But I don’t know that I would do it again.

Posted in burkitts, cancer, cell, chemotherapy, Home, hope, lymphoma, transplant, Uncategorized | 2 Comments

Day +5

Posted on November 15, 2014 by Robert I Baxter

Today is Day +5 of my stem cell transplant. The doctor shared with me this morning that she is pleased with my progress.

I seem to be on the better side of the possibilities of symptoms. I am having diarrhea, headaches, weakness, and now bone pain is setting in. Occasional nausea/vomiting. All of these are expected.

My blood counts have dropped as projected. My hemoglobin the last two days was 7.8 each day and 8 this morning. My platelets dropped to “10” today, which is critical. My white blood cell counts are all zero, which is the exact reason I am undergoing all this stem cell transplant. Since the problem is a part of my white blood cells multiplying way too quickly (the “B” cells), they kill ’em all including the bone marrow. Then the stem cells are administered to help the bone marrow to start producing again. Without the stem cells, this level of chemotherapy would probably not be possible.

They are breaking out a 55 gallon drum of blood products for me. I received platelets today, blood yesterday and the day before. This is expected. My blood type is AB+ and that makes me a universal recipient for blood and a universal donor for plasma (don’t ask).

The next few days should prove to be interesting. I was told day +6 through day +12 are some of the hardest due to engraftment. Engraftment is where the stem cells take up residence where they belong (bone marrow) and start populating and regrowing (it has been dead now for a few days).

I will be receiving Neupogen the next 6 days. Neupogen, also known as “Nuke-again,” “PAIN-again,” and “never-again” by yours truly, is a hormone that is going to act on my bone marrow as it is coming back to life to force it to produce all the baby stem cells it possibly can. Let me put it in plain simple English: SUCKS. Bone pain is bad pain. Bone pain is nothing to mess around with. My bones are already aching as of today as they are starting to wake up and engraft.

At any rate, if you are reading from the wordpress site, be sure to visit http://www.kraftsims.com. You can link to videos and pictures from there. I have been blogging or vlogging this whole thing since I first found the lump on my neck in June.

Just for grins, including two pics (not related).

The first is of the River walk in San Antonio, Texas. Love that place.

taken early in the morning

taken early in the morning

The second is a picture of my youngest daughter with me and “baby Jack Jack.” This was a teddy bear given to her in 2003 when she was in the emergency room at Cook Children’s in Fort Worth. She was quite ill and they were preparing me for the worst (they thought either meningitis or a brain tumor). They did a spinal tap and to help calm her and give her something to focus on (she was 9 at the time), they gave her a teddy bear. Very huggable. She took it off her shelf and dressed it in some baby clothes she purchased. Too cute and thoughtful!

My youngest daughter brought me a teddy dressed as Superman. I named him "baby Jack Jack" from The Incredibles. I love it!

My youngest daughter brought me a teddy dressed as Superman. I named him “baby Jack Jack” from The Incredibles. I love it!

Posted in burkitts, cancer, cell, lymphoma, stem, transplant | Tagged , , , , , , , , | Leave a comment

Weak and Transfused

Posted on November 14, 2014 by Robert I Baxter

Today is day +2. I found myself able to move to the restroom, then to the couch. That was about it. No more strength. Profoundly weak and short of breath. My hemoglobin was 7.8, neutrophils are gone completely, white blood cell count was something like 0.1, platelets were around 50 or above. All these together produce:

– weak

– prone to infecti0ns

– tired and short of breath

– having to do “CHG” wipes 2 hours after showering. Reduces the bacteria count on the skin

– needing blood, got a transfusion today. Really perked up after that!

– needed to ambulate (walk) the halls. No go. Just way to exhausted. Both PT and OT came by I gave them a pink slip for tomorrow

– I have lovely case of the skitters (diarrhea for you non southerners). Performing damage control there….

– able to hold down two small easy meals today. That was refreshing. They are pumping me up on Zofran every 8 hours, and sucralfate to coat my stomach which has been burning badly.

– I have been having headaches due to the chemo. It has been my primary symptom during 2008’s Burkitt’s battle and with this one. They have me taking Fioricet (sp?) and it has really helped me.

during one of my transfusions...

during one of my transfusions…

This is a list of my activities for the day. Got some of them done, some not.

This is a list of my activities for the day. Got some of them done, some not.

After the transfusion was completed, I felt a good bit stronger. Able to walk a little. I then took a shower. A few hours after that, they performed the odd but necessary ritual of “CHG” wipe down. Everything on my body gets systematically wiped down with the strong antiseptic solution. Avoid face/head/groin/buttocks. Otherwise, every thing gets thoroughly coated.

Thanks for all the love, prayers, and support. Love you all so much!

-Robert

Posted in bone, burkitts, cancer, cell, chemotherapy, healing, hodgkins, lymphoma, marrow, non, stem, transplant | Tagged , , , , , , | Leave a comment

My New Birthday: Day Zero

Posted on November 11, 2014 by Robert I Baxter

11/11/14 is now my “new birthday.” At least that is what the transplant RN’s tell me.

Today, I will receive back into my body the stem cells I “gave up” to an apheresis machine a couple of weeks ago. Here’s what I understand so far:

9am – begin IV fluids (normal saline)

10:30am – Tylenol and Benadryl

11am – transplant will begin.

I am told there will be 7 bags of approximately 50 mls of stem cells. The color will be red, but that is from pieces of red blood cells. They will arrive in a freezer, packed in DMSO (preservative), and extremely frozen (their words).

They will run them in as fast as my body can tolerate, which they anticipate to be 2 hours. The preservative DMSO will cause me to smell garlic or cream corn. Evidently it is so strong that people walking down the hall or entering the room know immediately when a SCT is underway.

The DMSO preserves the stem cells. As it is infused into the body, it will travel to the right side of the heart, then to the lungs. When DMSO is in the presence of the oxygen exchange in the lungs, it is oxidized or released/changed. Something like that. Hence the odor. I am told it will ooze out of my pores.

A chaplain will be coming to bless the cells. Evidently this is a tradition. Every SCT is reported to the chaplains. If I understood correctly, when Carter Blood Care arrives with the stem cells in a freezer, the chaplain arrives about the same time. I find this comforting and most welcome.

My nurse will be with me the whole time. They set up “shop” in my room. Takes time to verify every bag of stem cells are indeed my own. Then to defrost. Once defrosted, there can be no delay in administration. I think the window is like 1 hour from defrost to infusion. The stem cells are not stable long at temperatures above freezing.

As a side note, not sure I’m going to put out many more videos for the time being. I’m finding the internet connection frustrating and I’m getting tired and less able to focus. I’m still recording the video material, but not finding the time to process it through. I think if I had stable wi-fi, it wouldn’t be too much of a problem. I keep getting disconnected and can’t babysit the computer for 12 hours to make sure the videos are uploading. I’ll get to them when I get home and produce a chronology of videos for you all to witness what I am seeing.

I will keep blogging for you all to keep you updated.

Couple of pictures for you:

Every morning about 4am or so, this larger than life creature rumbles into my room. I have named it "The Politician." It lies. Constantly.

Every morning about 4am or so, this larger than life creature rumbles into my room. I have named it “The Politician.” It lies. Constantly.

My Tri-Fusion Catheter during a dressing change. Now you know...

My Tri-Fusion Catheter during a dressing change. Now you know…

Posted in burkitts, cancer, chemotherapy, lymphoma | Tagged , , , , , , | 5 Comments

Day -1 (so far)

Posted on November 10, 2014 by Robert I Baxter

Tomorrow will be day zero, stem cell infusion. Yesterday completed my chemo.

Day -1 is a designated “rest day.” What have I done so far with my day?

Woke up with a headache.
Took Tylenol.
Ate breakfast.
Took a shower.
Sat on the couch and watched TV and read a book.
My mouth started watering, never a good sign.
Grabbed the bucket.
Put the lining of my stomach inside the bucket.
Now I’m in bed.
Sick.
Happy rest day.

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Chewing Ice

Posted on November 9, 2014 by Robert I Baxter

Today is day -2. I will receive my final dose of chemotherapy, it is called melphalan. I am on a seven day countdown, with day zero being the day I receive my stem cells back into my body.

Melphalan usually will cause mouth sores and throat sores and intestinal sores all the way through to the very bottom. Therefore, I am going to be chewing ice and swallowing ice starting 30 minutes before the infusion, all the way through the infusion, and for 30 minutes after the infusion.

After this infusion is completed, they will disconnect my IV. I will not need my IV again until Tuesday, which is day zero.

The chemo fatigue is starting to set in a little bit. It is not bad yet, but my counts in my blood are starting to drop. That is what is supposed to happen. The point of a stem cell transplant is to be able to administer extremely high doses of chemotherapy which will result in complete white blood cell destruction. My white blood cells are the problem, so they are going to obliterate them. The stem cells serve the purpose of helping my bone marrow to jump start much much quicker then it would without the stem cell infusion. I originally thought that the stem cells is what would heal me, but that is not true. What kills the cancer is the chemotherapy. Then the stem cells are used to recover my bone marrow and blood counts much quicker back to a normal capacity.

I am about to enter the thick of the battle. Let ‘er rip potato chip!

Hey, dig the cool Burkitts Lymphoma Society hoodie.

Www.burkittslymphomasociety.com

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Posted in burkitts, cancer, cell, chemotherapy, healing, hope, lymphoma, stem, transplant, Uncategorized | Leave a comment

Feeling Human

Posted on November 7, 2014 by Robert I Baxter

I slept last night the entire night. That felt really good. I feel almost human again. That is all!

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Brothers in the Battle

Posted on November 6, 2014 by Robert I Baxter

You don’t have to have met someone to feel a connection. Pen pals in the past, using the time tested snail mail, were able to sense a camaraderie and feel connected. Men who never knew each other one day, could feel a sense of bonds unshakable when in a trench during WW2.

The Burkitt’s Lymphoma Society has a private page for support. In this private page, we get down to the nitty gritty of dealing with cancer. It isn’t fun many times, other moments we rejoice at victories. Lots of information and support is shared.

In this video, I share how two families and their son’s have been as a brother in the battle against burkitt’s Lymphoma to myself. One impacted me strongly to continue making videos, the other helped me to get my lump in my neck checked out immediately.

Here’s the link to the video: http://youtu.be/_KrEizqvzlg

In other news, I’m on day -5 (minus 5) of my stem cell transplant. Counting down to day zero when I will get my stem cells back. I’m getting chemo that is anywhere from 2x to 4x as strong as what I was receiving just a few months ago. I have fairly well over all, but have had some nausea and headaches. Hope it doesn’t get any worse.

The food at this hospital is impressive. I thought I might lose weight during this procedure, but I’m starting to think I’ll put on weight.

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The other side of “B”

Posted on November 4, 2014 by Robert I Baxter

I am slowly waking up now. The BCNU chemotherapy was infused over one hour. It did not take long to put me to sleep. That is because it is suspended and alcohol.

I slept from about 10:45 until approximately 1:15. Just as predicted, I woke up very groggy and a good banging headache is forming. They’ve given me a small dose of hydrocodone to counteract the headache.

The nurse just now was warning me about the Malphalan, which is the M in the BEAM chemotherapy. She described trying to chew ice and keep my mouth my intestines as cold as possible. She said the diarrhea and the intestinal sores from the mouth to the end will not begin until approximately three days after. She said when the diarrhea hits, they will let the diarrhea run its course up to a point, and they will then test it to make sure it’s not something else causing it (C-Diff). Then they will give me Imodium or Lomotil.

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“B” of BEAM

Posted on November 4, 2014 by Robert I Baxter

Hi all,

I had a good night with one exception. I received benadryl IV. Never had an issue with it in the past. Had a “paradoxical” reaction. That was about 11pm last night. The hair on my arms is still standing up straight this morning and have strange sensations running across my body and tingling/hypersensitivity of nerves. Not a big deal, just odd and a bit uncomfortable. Having trouble sitting or staying still.

I’m going to be receiving the “B” of the beam chemo in a few minutes. I was told the next few hours will be interesting. It is based in alcohol and will cause a hangover. Don’t like hangovers. So they are going to premed me with all manner of strange meds and I am limited to bed for several hours.
I’ve got my phone off for right now, want to get through the next few hours without fielding phone calls. I’ll turn on the phone this afternoon. Hope you understand.
The food here is amazing, the room is great. The wi-fi is erratic, keeps shutting off every few minutes and I have to log back in again, and again, and again.
I’ll give a report later as to how the chemo goes and when I turn my phone on again.
-Robert
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