I haven't been able to blog most of these days because I came down with multiple fevers. Some resulted in chills, some resulted in getting hot. The doctors and nurses say this is pretty par for the course, although they did say mine were coming on later than others. My mouth and throat are also filled with sores, so swallowing is hard to do these days. Most of my meals have been high in protein Ensure shakes (chocolate, vanilla, strawberry) and apple sauce. I also haven't been able to get good sleep because if it isn't late night blood or platelet transfusions keeping me up, the fevers and the mucositis definitely keep me up. All was not bad however. Mike, one of my old junior high friends, and his wife Charmaine paid me a surprise visit one of the days. Jennifer Lee, one of our friends here in the South Bay, whose husband also had BMT a few years ago, came by to visit.
I'm so thankful that I don't have to go through this alone. God gave me such a wonderful wife in Becky who has been with me every step of way, staying late at times, encouraging me to walk physically and spiritually and do the spirometer, bringing me whatever I need, although I may not be in the best of moods. She truly has been a great helper to me.
Saturday, July 29, 2017
Wednesday, July 26, 2017
Day Plus 6-Get Plugged In and Bald
Today Becky brought my TV so I was able to hookup my PS3 and Firestick. I was also able to setup my Amazon Echo. So between blogging on my laptop, listening to music on Echo, playing games on PS3, and watching movies on Firestick I can no longer say that I'm bored.
Not much to report on my health other than the throat pain has increased and the frequent bowel movements have continued. I'm still eating solid foods for now. I realized that I've been shedding hair now as well, so rather than wait for it to fall out in patches, I decided to shave my head again, this time down to the skin. I'm not Mr. Clean bald, but definitely military bald. From what the doctors have told me, I've also lost about 8-10 lbs.
Not much to report on my health other than the throat pain has increased and the frequent bowel movements have continued. I'm still eating solid foods for now. I realized that I've been shedding hair now as well, so rather than wait for it to fall out in patches, I decided to shave my head again, this time down to the skin. I'm not Mr. Clean bald, but definitely military bald. From what the doctors have told me, I've also lost about 8-10 lbs.
Tuesday, July 25, 2017
Day Plus 5-Flying Solo
On Monday July 24, my white blood cell counts were at 0.2, basically making me neutropenic. So that meant it was time to get my own room. Sharing a room was always hard, when you had guests over, when you had to use the shower or toilet, watching television, having conversations. Not to mention getting good sleep, when your neighbor would have his IV machine beeping or have nurses come in and out to check vitals, while I was having the same things done to myself. Romans 8:28 says "If it is possible, as much as depends on you, live peaceably with all men." Sharing a room with a complete stranger, who was in the very same position you are in, definitely put living peaceably to the test.
I was in 3 different shared rooms during my first 2 weeks, with 3 total strangers. The first was King James, an older man who was very talkative and quirky. He could never get my name right. The second was Gus, an older man who was soft-spoken, transparent, and humble. He was always pleasant to talk with. The third was Kevin, the celebrity, who was a few years younger than me, who had all the nurses melting over his kids' pictures. I swear he was a secret celebrity because all the nurses would come in and constantly talk with him like he was their best friend.
So in the middle of the afternoon, they finally moved me to a solo room. It was worth the wait. I hope I get to stay in here the entire remainder of my hospital stay, because some of the nurses mentioned some people get put back in shared rooms when their counts go back up. Becky will also bringing my 24" TV with her the next day so I can finally hook up my PS3 and Firestick. I have the perfect spot for it in front of my bed, below the stringed lights my coworkers gave me.
Sunday, July 23, 2017
Day Plus 4-It Is Well
Reflecting on that fact that we have been living in the Palo Alto area for 2 weeks now, in the hospital for 13 days. While I find myself complaining at times about being trapped in the hospital, eating the same food, constantly fighting nausea, being awakened in the middle of the night by nurses, I'm brought back to the fact that God, in His absolute sovereignty, has allowed me to be in this position, and to that, rather than saying woe is me, I can say that it is well with my soul. Charles Spurgeon, the prince of preachers, said, “It would be a very sharp and trying experience to me to think that I have an affliction which God never sent me, that the bitter cup was never filled by his hand, that my trials were never measured out by him, nor sent to me by his arrangement of their weight and quantity.”
It's easy when things are going well, to be thankful to God when you have good health, a stable job, and good relationships. Or do we even think about God at all when all is well? Spurgeon also said, “I am afraid that all the grace that I have got of my comfortable and easy times and happy hours, might almost lie on a penny. But the good that I have received from my sorrows, and pains, and griefs, is altogether incalculable … Affliction is the best bit of furniture in my house. It is the best book in a minister’s library.”
Like Spurgeon, I need to continually remind myself that one reason God brought trials was to give me more grace — more experienced nearness to Christ. Spurgeon said trials brought him far more grace than ease and comfort did (Psa 119:67; Rom 5:3-5; 2Co 12:9-10; Heb 12:10; James 1:2-4; 1Pe 1:6-7). As I continue these 2 more weeks in the hospital, and 2 more months living in the area until mid-October, and 1 year to fully recover, my desire is to be continually thrown against the Rock which my trials beat and batter me against. And to that I can echo the words of the great hymn writer Horatio Spafford:
When peace, like a river, attendeth my way
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say
It is well, it is well with my soul
It's easy when things are going well, to be thankful to God when you have good health, a stable job, and good relationships. Or do we even think about God at all when all is well? Spurgeon also said, “I am afraid that all the grace that I have got of my comfortable and easy times and happy hours, might almost lie on a penny. But the good that I have received from my sorrows, and pains, and griefs, is altogether incalculable … Affliction is the best bit of furniture in my house. It is the best book in a minister’s library.”
Like Spurgeon, I need to continually remind myself that one reason God brought trials was to give me more grace — more experienced nearness to Christ. Spurgeon said trials brought him far more grace than ease and comfort did (Psa 119:67; Rom 5:3-5; 2Co 12:9-10; Heb 12:10; James 1:2-4; 1Pe 1:6-7). As I continue these 2 more weeks in the hospital, and 2 more months living in the area until mid-October, and 1 year to fully recover, my desire is to be continually thrown against the Rock which my trials beat and batter me against. And to that I can echo the words of the great hymn writer Horatio Spafford:
When peace, like a river, attendeth my way
When sorrows like sea billows roll;
Whatever my lot, Thou hast taught me to say
It is well, it is well with my soul
Day Plus 3-Saturday
Saturday was pretty quiet. Just catching up on my SDCC 2017 stuff. I watched the trailers for Stranger Things 2, Justice League, The Defenders, Star Trek Discovery (which features Sasha who died on last season's Walking Dead), Thor: Ragnarok. Nausea was down to a minimum however diarrhea was going strong. One of the side effects from the chemo. My sister Eileen and Kevin came by to visit for a little bit and brought Becky a Sprinkles cupcake. Kristine was also working at Stanford Healthcare that day and happened to be at the hospital so she stopped by as well.
Saturday, July 22, 2017
Day Plus 2-Thinking About SDCC
Not too much went on today, outside of the diarrhea, nausea, and stir craziness that comes with being restricted to a hospital. Becky and I did get a chance to catch the Celtic concert going on in the atrium from 1230-130. It was good just to get out before I'm officially confined to the E1 unit once I become neutropenic.
I spent portions of the day reading/listening through my 40 day New Testament Plan, scrolling through SD Comic Con 2017 articles, youtube videos, and pictures on the latest movie news, action figure photos, etc. all of which are going on as we speak through this weekend. Man, I can't believe it's been 5 years since my last Comic-Con. Why have you become so popular that we can no longer get tickets? My rant for the day. Becky and I even found a game Words with Friends that we could play against each other while away.
Today was interesting in the early evening, as I was very much on edge and nauseous. Maybe it was the smell of new neighbor's food wafting in the air. I tried to take a lap to get the edge off. What ultimately helped was a dose of Compazine in the IV and Atavin under the tongue to help with the nausea and put me to sleep. But of course now I'm wide awake typing this post. I included a few of my favorite Comic-Con pictures from the last time we went in 2012, the year I left my backpack of clothes, my work cell phone, and a few inexpensive souvenirs behind in a cab only to find out that my items were in possession by a group of homeless folks in SD. Long story. I lost my Shelby Cobra Shirt (below) and Nacho Libre Mask (below) on that trip.
I spent portions of the day reading/listening through my 40 day New Testament Plan, scrolling through SD Comic Con 2017 articles, youtube videos, and pictures on the latest movie news, action figure photos, etc. all of which are going on as we speak through this weekend. Man, I can't believe it's been 5 years since my last Comic-Con. Why have you become so popular that we can no longer get tickets? My rant for the day. Becky and I even found a game Words with Friends that we could play against each other while away.
Today was interesting in the early evening, as I was very much on edge and nauseous. Maybe it was the smell of new neighbor's food wafting in the air. I tried to take a lap to get the edge off. What ultimately helped was a dose of Compazine in the IV and Atavin under the tongue to help with the nausea and put me to sleep. But of course now I'm wide awake typing this post. I included a few of my favorite Comic-Con pictures from the last time we went in 2012, the year I left my backpack of clothes, my work cell phone, and a few inexpensive souvenirs behind in a cab only to find out that my items were in possession by a group of homeless folks in SD. Long story. I lost my Shelby Cobra Shirt (below) and Nacho Libre Mask (below) on that trip.
Day Plus 1-The Start of the Grafting Process
Not too much happening on the day after transplant. I did receive my first treatment of Methotrexate (MTX), which is a chemotherapy agent and immune system suppressant, given on Days 1,3,6,11 to suspend T-cell growth. I also received a continued small dose of Tacrolimus (which started the day before transplant), an immunosuppressive drug used mainly after allogeneic organ transplant to lower the risk of organ rejection. It achieves this by inhibiting the production of interleukin-2, a molecule that promotes the development and proliferation of T cells, which are vital to the body's learned (or adaptive) immune response. It basically suppresses the immune system from growing too fast. Otherwise, my day was filled with the usual nausea, lots of sleeping, and eating.
From what my doctors tell me, it typically takes several weeks for the new marrow to fully graft into my body. During this time, the cumulative effect of the chemo I've been given (Busulfan, Cytoxan) begins to lower my blood counts until I've becomes "neutropenic," meaning there is an abnormally low concentration of neutrophils (a type of white blood cell) in the blood. Neutrophils make up the majority of circulating white blood cells and serve as the primary defense against infections by destroying bacteria, bacterial fragments and immunoglobulin-bound viruses in the blood. To put in pirate terms, take down the defenses and the ship is ripe for the plundering, or in my case grafting.
The grafting process is quite interesting. During this process, I'll be given meds to help suppress the body's normal defenses in order to help receive the foreign marrow. Minor to extreme rejections are what is called graft vs host disease. This could be as minor as skin rashes to as major as organ failure.
I'm reminded of the passage in Romans 11, where Paul talks about the grafting in of Gentile believers with the Jewish believers, all through the power and work of Christ. In order for a foreign material to be received and partake in the benefits of the natural plant being tied into the root, it takes an outside work of God for this to occur. The same could be said of my bone marrow transplant.
11 So I ask, did they stumble in order that they might fall? By no means! Rather, through their trespass salvation has come to the Gentiles, so as to make Israel jealous. 12 Now if their trespass means riches for the world, and if their failure means riches for the Gentiles, how much more will their full inclusion[b] mean!
13 Now I am speaking to you Gentiles. Inasmuch then as I am an apostle to the Gentiles, I magnify my ministry 14 in order somehow to make my fellow Jews jealous, and thus save some of them. 15 For if their rejection means the reconciliation of the world, what will their acceptance mean but life from the dead? 16 If the dough offered as firstfruits is holy, so is the whole lump, and if the root is holy, so are the branches.
17 But if some of the branches were broken off, and you, although a wild olive shoot, were grafted in among the others and now share in the nourishing root[c] of the olive tree, 18 do not be arrogant toward the branches. If you are, remember it is not you who support the root, but the root that supports you. 19 Then you will say, “Branches were broken off so that I might be grafted in.” 20 That is true. They were broken off because of their unbelief, but you stand fast through faith. So do not become proud, but fear. 21 For if God did not spare the natural branches, neither will he spare you. 22 Note then the kindness and the severity of God: severity toward those who have fallen, but God's kindness to you, provided you continue in his kindness. Otherwise you too will be cut off. 23 And even they, if they do not continue in their unbelief, will be grafted in, for God has the power to graft them in again. 24 For if you were cut from what is by nature a wild olive tree, and grafted, contrary to nature, into a cultivated olive tree, how much more will these, the natural branches, be grafted back into their own olive tree.
From what my doctors tell me, it typically takes several weeks for the new marrow to fully graft into my body. During this time, the cumulative effect of the chemo I've been given (Busulfan, Cytoxan) begins to lower my blood counts until I've becomes "neutropenic," meaning there is an abnormally low concentration of neutrophils (a type of white blood cell) in the blood. Neutrophils make up the majority of circulating white blood cells and serve as the primary defense against infections by destroying bacteria, bacterial fragments and immunoglobulin-bound viruses in the blood. To put in pirate terms, take down the defenses and the ship is ripe for the plundering, or in my case grafting.
The grafting process is quite interesting. During this process, I'll be given meds to help suppress the body's normal defenses in order to help receive the foreign marrow. Minor to extreme rejections are what is called graft vs host disease. This could be as minor as skin rashes to as major as organ failure.
I'm reminded of the passage in Romans 11, where Paul talks about the grafting in of Gentile believers with the Jewish believers, all through the power and work of Christ. In order for a foreign material to be received and partake in the benefits of the natural plant being tied into the root, it takes an outside work of God for this to occur. The same could be said of my bone marrow transplant.
11 So I ask, did they stumble in order that they might fall? By no means! Rather, through their trespass salvation has come to the Gentiles, so as to make Israel jealous. 12 Now if their trespass means riches for the world, and if their failure means riches for the Gentiles, how much more will their full inclusion[b] mean!
13 Now I am speaking to you Gentiles. Inasmuch then as I am an apostle to the Gentiles, I magnify my ministry 14 in order somehow to make my fellow Jews jealous, and thus save some of them. 15 For if their rejection means the reconciliation of the world, what will their acceptance mean but life from the dead? 16 If the dough offered as firstfruits is holy, so is the whole lump, and if the root is holy, so are the branches.
17 But if some of the branches were broken off, and you, although a wild olive shoot, were grafted in among the others and now share in the nourishing root[c] of the olive tree, 18 do not be arrogant toward the branches. If you are, remember it is not you who support the root, but the root that supports you. 19 Then you will say, “Branches were broken off so that I might be grafted in.” 20 That is true. They were broken off because of their unbelief, but you stand fast through faith. So do not become proud, but fear. 21 For if God did not spare the natural branches, neither will he spare you. 22 Note then the kindness and the severity of God: severity toward those who have fallen, but God's kindness to you, provided you continue in his kindness. Otherwise you too will be cut off. 23 And even they, if they do not continue in their unbelief, will be grafted in, for God has the power to graft them in again. 24 For if you were cut from what is by nature a wild olive tree, and grafted, contrary to nature, into a cultivated olive tree, how much more will these, the natural branches, be grafted back into their own olive tree.
Thursday, July 20, 2017
Day 0-Transplant Day
July 19, 201
7 was my bone marrow transplant day. This is what Stanford calls for BMT patients, their 2nd birthday. You've been given a 2nd chance at life by the introduction of new bone marrow into your body. If they use your own blood, it's called autologous. If they use another person's blood, it called allogenic. My youngest sister, Emmeline Reyes, born on November 22, 1982 was my donor, who is also O+ like me. She spent the prior 5 days getting daily shots to boost stem-cell production, and on the day before my transplant they harvested her blood in order to separate the marrow via centrifuge. Getting those shots made my sister get sick, nauseous, and achey. I recall my sister saying when she first got her blood tested before she was my match, that she knew she would be my match because we both liked using Excel. It was the engineer in both of us.
The transplant itself took place during noon and lasted only for an hour. Marrow, unlike blood, looks more watered-down. I received the marrow via IV, just like you would with a blood transfusion. I guess there are receptors in our hip where the marrow normally resides that draw in the marrow, just like a homing signal. I was actually very tired most of the day, and spent it sleeping. After my transplant was complete, a group of the nurses came in and sung happy birthday to me and left me with a cake. My parents and sister Eileen came to visit later that afternoon too, leaving me with a few birthday presents as well (Curry shirt, Star Wars Activity Book, and a few other books). Did you know my dad's birthday was that same day as well?
Wednesday, July 19, 2017
Day Minus 1-Rest
On the day before my transplant, they just give me some meds and allow me to rest. I was able to enjoy a nice omelet with everything on it for breakfast, a tuna salad sandwich for lunch, and chicken strips for dinner. Sharon and also came by to visit for a few hours with the kids, who hung out outside. Not too much went on today. In the evening, they gave me another bag of blood.
Tuesday, July 18, 2017
Day Minus 2-Watery Eyes, Congestion, Runny Nose, and Itchy Mouth
Today was my 2nd and final day for the chemo Cytoxan, and probably my worst of all the days that I've been here. Today's reactions were nausea, watery eyes, congestion, runny nose, and itchy mouth. I was on a bunch of meds to counteract the reactions to the chemo. The only one that seemed to work was the anti-nausea med, Zofran. Munching on ice chips only gave me momentary relief from the mouth itchiness. All I could do was try to sleep off the reactions with a cold towel on my head.
Todd and Rhonda came to visit today. Todd hung out with me in the room, while Rhonda and the kids hung out with Becky by the fountains. It's always good to hang out with friends and family to help keep the spirits up as long as I'm able to not be nauseous. I capped off the night with my first blood transfusion since I've been here. They didn't want to transfuse me until I went under 7.0 hemoglobin. They gave me some Tylenol and Benadryl in my IV to help with the watery eyes, congestion, and runny nose. That stuff worked immediately. Where was that stuff all day?
Todd and Rhonda came to visit today. Todd hung out with me in the room, while Rhonda and the kids hung out with Becky by the fountains. It's always good to hang out with friends and family to help keep the spirits up as long as I'm able to not be nauseous. I capped off the night with my first blood transfusion since I've been here. They didn't want to transfuse me until I went under 7.0 hemoglobin. They gave me some Tylenol and Benadryl in my IV to help with the watery eyes, congestion, and runny nose. That stuff worked immediately. Where was that stuff all day?
Sunday, July 16, 2017
Day Minus 3-Today Was a Good Day
Today was the start of the 1st of 2 days of the chemo drug Cytoxan on my calendar. This is the one that the nurses warned me about. The nausea was minimized with Zofran and Ativan. The mouth sores from mucositis were non-existent so far thanks to diligent daily 5x salt water rinses, thanks to Becky's persistence. Mouth itchiness was helped by chewing on ice cubes. Bleeding was non-existent thanks to Lasix which caused frequent bathroom breaks. All the while trusting in God for everything. Becky shared with me Joshua 1:9, which says "Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go." And guess what, the Lord allowed me stand up under the test because He was right there with me. He is indeed faithful and true.
Today was a treat because I was able to listen to and watch my church's (Community Bible Church of Vallejo; www.cbcvallejo.org ) morning and evening services livestreamed to my computer via Skype. Thank goodness for technology. Becky and I also started our coloring books today thanks to Cassia and Walker, who provided us with an awesome and very thoughtful set of books, color pencils, case, eraser, sharpener, and encouraging notes. Love these guys dearly!
And to top it all off, I had turkey for lunch and turkey for dinner, and it was good. Today was a good day.
Today was a treat because I was able to listen to and watch my church's (Community Bible Church of Vallejo; www.cbcvallejo.org ) morning and evening services livestreamed to my computer via Skype. Thank goodness for technology. Becky and I also started our coloring books today thanks to Cassia and Walker, who provided us with an awesome and very thoughtful set of books, color pencils, case, eraser, sharpener, and encouraging notes. Love these guys dearly!
And to top it all off, I had turkey for lunch and turkey for dinner, and it was good. Today was a good day.
Day Minus 4-It's Saturday
Never thought I'd be spending my Saturdays in the hospital. When I was getting weekly or bi-weekly blood transfusions, I tried to avoid going the hospital on Saturdays and Sundays as much as possible. Four weeks of this stuff. I spent the morning catching up on Fear the Walking Dead to the mid-season finale. Today my sister-in-law Melissa and my sister Eileen came to visit. Em was here again for her 2nd round of stem cell shots, but decided to stay outside because she was feeling achey from the shots. As usual, I was quite nauseous most of the day so my nurse had me try Ativan. It helped, but it made me really sleepy. By the end of the evening I was still without a roomie, so thank the Lord! Makes it so much easier to get around and to have guests in the room.
Saturday, July 15, 2017
Day Minus 5-Nausea and Visitors
The day started off with a visit from my parents and sister, Emmie, who is donating her bone marrow for me. They stopped off to visit following the 1st of Em's shots at the Cancer Center to increase her stem cell production. Em dropped off the Amazon Echo she ordered for me on Prime Day. I ordered the white one. My other sister ordered one later in the evening and hers isn't scheduled to arrive until mid-August. My day was also filled with quite a bit of nausea. In fact, as I was having a conversation with the NP in the morning, I started to feel quite nauseous and started to try yacking in the sink. Now I just stare at my board and see all nausea meds my nurses give me: Zofran, Zyprexa, Ativan, Compazine.
Becky and I tried to catch the weekly concert in the atrium from 1230-130, but they were done by the time we got there. Apparently a lot of the chemo patients go to watch. So my solo isolation room also didn't last very long. In the evening, I was moved again to a shared room after my swabs came back negative for a cold. At least I was flying solo in shared room. The day was capped off with Julian and Michelle visiting for a few hours. They brought the extra luggage I left behind with the rest of my clothes.
Becky and I tried to catch the weekly concert in the atrium from 1230-130, but they were done by the time we got there. Apparently a lot of the chemo patients go to watch. So my solo isolation room also didn't last very long. In the evening, I was moved again to a shared room after my swabs came back negative for a cold. At least I was flying solo in shared room. The day was capped off with Julian and Michelle visiting for a few hours. They brought the extra luggage I left behind with the rest of my clothes.
Friday, July 14, 2017
Day Minus 6-Change of Scenery
Today was filled with a lot of bathroom trips. A whole lot. Because of all the fluids they were pumping in me they try to maintain you at the same weight you came in at. This means, that if you start retaining more water instead of flushing it out, they give you this medication called Lasix (furosemide), which is a loop diuretic that prevents your body from absorbing too much salt. This basically means that you urinate a lot. To reconcile the fluids you get pumped in, they also have you use collection containers. One of the nurses told me that in a span of about 4 hours after they gave me Lasix, I urinated about 10 lbs worth of fluids.
Becky and I did a bunch of laps yesterday around E1 Unit. Maybe 25 laps. We also got permission to leave the unit to try to check out the model train at the end of F Unit, in the Children's Hospital, before we were stopped by security. I guess they don't want hospital patients wandering over to that side.
Yesterday evening I was also feeling warm. Not enough for a fever, but I was running a little warmer than normal and had some mucus in my throat. To protect me and my roomie, they decided to transfer me to a private room late last night. So I packed up my stuff and the nursing assistants helped move me, along with my bed, desk, and side table. I guess getting sick or the threat of getting sick is what it takes to get a private room around here. My room is a whole lot bigger than the last one, complete with furnace ducting and all.
Food was good yesterday again. I got French toast, eggs, and sausage for breakfast; meatloaf with mashed potatoes and gravy for lunch; and trout with rice and corn for dinner.
Becky and I did a bunch of laps yesterday around E1 Unit. Maybe 25 laps. We also got permission to leave the unit to try to check out the model train at the end of F Unit, in the Children's Hospital, before we were stopped by security. I guess they don't want hospital patients wandering over to that side.
Yesterday evening I was also feeling warm. Not enough for a fever, but I was running a little warmer than normal and had some mucus in my throat. To protect me and my roomie, they decided to transfer me to a private room late last night. So I packed up my stuff and the nursing assistants helped move me, along with my bed, desk, and side table. I guess getting sick or the threat of getting sick is what it takes to get a private room around here. My room is a whole lot bigger than the last one, complete with furnace ducting and all.
Food was good yesterday again. I got French toast, eggs, and sausage for breakfast; meatloaf with mashed potatoes and gravy for lunch; and trout with rice and corn for dinner.
Wednesday, July 12, 2017
Day Minus 7-Busulfan, PT, and HEPA Masks
Today marked my first full day at the hospital. It was filled with a lot visits from the nurses, nurses assistants, janitors, physical therapists, doctors, and food service people. While the rooms seem small and outdated, Stanford definitely knows how provide good care for their patients. In the E1 Unit, there are 22 rooms, 4 with double occupancy. For the first week, I have to stay in this shared room until my white blood cell counts drop to be considered "neutropenic."
Neutropenia (noo-troe-PEE-nee-uh) is an abnormally low level of neutrophils. Neutrophils are a common type of white blood cell important to fighting off infections — particularly those caused by bacteria. For adults, counts of less than 1,500 neutrophils per microliter of blood are considered to be neutropenia. For children, the cell count indicating neutropenia varies with age.
I am allowed to walk outside of my room with a HEPA mask and around the hospital, even outside, until my counts make me neutropenic. At that point, I will be restricted to the E1 Unit. My unit is basically a triangle, with rooms along the sides, and nurses stations at each of the three points. There is one conference room near the entrance that can be used by guests to hang out in, or meet with the patients, if it is not being used for meetings.
Today at 6AM was also my first of four chemo treatments of busulfan (3 hours each day) delivered by IV. It is supposed to be well tolerated by most patients. Other than that, its saline all day long, coupled with meds, and a few rounds of blood tests (CBC, CMP).
I was visited by a physical therapist today who introduced me to their exercise regimen for patients. He recommended getting exercise daily, multiple times a day, which means frequent walks around the triangle. Felt like NASCAR doing that today. He left me with an elastic band to use for light strengthening and stretching exercises like bicep curls, tricep curls, ankle stretches. He also left me a spirometer, an instrument for exercising and measuring the air capacity of the lungs.
This morning was also filled with a quick visit by doctors doing rounds. I guess every month there is a rotation of attending doctors on the floor, so it happens to be that the doctor we met with a few days ago is also the attending doctor this month. It gets crazy when the doctors visit, and you have guests and your nurses or nurses assistants all in the room at the same time. Talk about sardine can.
Becky and I capped off the evening by playing some games (Sequence and Blokus), eating dinner, and watching some Jeopardy in the conference room. Good to get out of the room and do something different besides sit in bed.
The food was good yesterday. I ordered teriyaki udon noodles with chicken and shrimp for lunch and an avocado burger with potato wedges for dinner.
Neutropenia (noo-troe-PEE-nee-uh) is an abnormally low level of neutrophils. Neutrophils are a common type of white blood cell important to fighting off infections — particularly those caused by bacteria. For adults, counts of less than 1,500 neutrophils per microliter of blood are considered to be neutropenia. For children, the cell count indicating neutropenia varies with age.
I am allowed to walk outside of my room with a HEPA mask and around the hospital, even outside, until my counts make me neutropenic. At that point, I will be restricted to the E1 Unit. My unit is basically a triangle, with rooms along the sides, and nurses stations at each of the three points. There is one conference room near the entrance that can be used by guests to hang out in, or meet with the patients, if it is not being used for meetings.
I was visited by a physical therapist today who introduced me to their exercise regimen for patients. He recommended getting exercise daily, multiple times a day, which means frequent walks around the triangle. Felt like NASCAR doing that today. He left me with an elastic band to use for light strengthening and stretching exercises like bicep curls, tricep curls, ankle stretches. He also left me a spirometer, an instrument for exercising and measuring the air capacity of the lungs.
This morning was also filled with a quick visit by doctors doing rounds. I guess every month there is a rotation of attending doctors on the floor, so it happens to be that the doctor we met with a few days ago is also the attending doctor this month. It gets crazy when the doctors visit, and you have guests and your nurses or nurses assistants all in the room at the same time. Talk about sardine can.
Becky and I capped off the evening by playing some games (Sequence and Blokus), eating dinner, and watching some Jeopardy in the conference room. Good to get out of the room and do something different besides sit in bed.
The food was good yesterday. I ordered teriyaki udon noodles with chicken and shrimp for lunch and an avocado burger with potato wedges for dinner.
Not 1, Not 2, Not 3...
So strange thing I learned this morning. The other guy I'm sharing my room with at Stanford is none other than King, James...James King that is. He took his talents to the South Bay. I should ask him if he's ever had anyone comment on his name. When he finishes his bone marrow transplant, will he be the New King James? Too much time on my hand to think of all these weird things.
Tuesday, July 11, 2017
Day Minus 8-Catheters and Braised Beef
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| Hickman Catheter |
Today also marks my first night being admitted into the hospital in the E1 unit, which is where all the bone marrow transplant patients stay. I'm sharing the room with another guy, which makes for twice as many nurse visits as they check us every hour. Hope I can get some sleep. One of the nice perks at least is having room service until 8pm, where I have a nice menu to choose from. In fact I was able to enjoy braised beef short ribs with rice tonight, which was very delicious. So tonight I'm just getting a bunch of saline pumped into me, going to the bathroom every hour for them to take samples, as well taking a bunch of meds to help prevent some reactions to the chemo I'm starting tomorrow.
Thankful that while in my youth (yes 41 is still young), as I fight this cancer, my body may fail me, (the side effects from my disease as well as the pending chemo), but to know that as I wait upon the Lord, He ultimately is the one who supplies me with the renewed strength I require daily to persevere
in this trial.
Isaiah 40:30-31
Even the youths shall faint and be weary,
And the young men shall utterly fall,
But those who wait on the Lord
Shall renew their strength;
They shall mount up with wings like eagles,
They shall run and not be weary,
They shall walk and not faint.
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| Going Treasure Troll |
Weird AirBnB Experiences
We don't use AirBnB or VRBO very often. We like the privacy of getting a hotel. Yesterday, we checked into the AirBnB home that Becky will be staying in (I stayed with her for the first night here) for the first couple of days before she checks into the Stanford Guest House for the month that I'm in the hospital. It was a nice older home in a quiet part of Mountain View near downtown owned by an elderly lady named Peg. As we walked into the home, we were asked to put all of our things down and sit on the couch. We were greeted by a very large white dog (Great Pyrenees) and a very attention starved cat. I wasn't sure if this was Peg's way of checking us out for drugs, explosives, and food, before she let us stay in her home. She told us it was so the pets wouldn't start barking as we were living in their home. The dog was actually very well behaved and left us alone after checking us out. The cat on the other hand kept shoving its hard head against my hand demanding to be petted. I am not a pet person. We sat and chatted with her for about 30 minutes, partly because I was asking her questions, and she was asking me about my medical condition and treatment (aren't there HIPAA laws against this). Books of all types, many on travel, lined her living room walls. In fact, our room had a shelf filled with books on Unix, Java, and C. She must have been an engineer or programmer for one of the many tech companies in the area. She told us that another gentleman was in the other room across from us. One of the many frequent types of renters that she gets visiting the Silicon Valley for job interviews, conferences, and other business.
Our room was actually very large, clean, and well-kept. It had an on-suite bathroom, which was good for privacy. Peg kindly offered to make us breakfast, which she offers as part of her rental according to other reviewers. Still weird, hearing her dog occasionally barking in the house, and the other guest walking around in the morning as he got ready for work. Overall, a nice first night staying here, especially when the room only cost us $100 a night vs the $250 a night you would pay for an inn in the nearby area (not sure why there are not many hotels here being the silicon valley). I would still prefer to have full run of the house, rather than have these weird encounters with home owners. Becky is on her own tonight with Peg and her playful pets.
Our room was actually very large, clean, and well-kept. It had an on-suite bathroom, which was good for privacy. Peg kindly offered to make us breakfast, which she offers as part of her rental according to other reviewers. Still weird, hearing her dog occasionally barking in the house, and the other guest walking around in the morning as he got ready for work. Overall, a nice first night staying here, especially when the room only cost us $100 a night vs the $250 a night you would pay for an inn in the nearby area (not sure why there are not many hotels here being the silicon valley). I would still prefer to have full run of the house, rather than have these weird encounters with home owners. Becky is on her own tonight with Peg and her playful pets.
My Hospital Calendar and Map
I've attached a calendar of my treatments for the time I will be living at the Stanford Hospital.
- Surgery to put in a new chest catheter on the 11th
- Two forms of chemotherapy for six days from the 12th-17th
- On the seventh day (18th) I rest
- Bone marrow transplant day is on the 19th, my 2nd birthday
Monday, July 10, 2017
10 Years of Dating
Call us sentimental, this past Saturday my wife Becky and I celebrated our 10 year dating anniversary by going back to the place that started it all, Mimi's Café in Fairfield. Even though all the food has totally changed, we were at least able to get "our booth." Yes, we have a booth. We don't go to Mimi's very often, in fact it has probably been three or four years, but it seems like every time we do, that little two person booth behind the check-in desk always seems to be open just for us. And of course from there, on February 16, 2008, I married my best friend. Proverbs 18:22 says, " He who finds a wife finds a good thing, And obtains favor from the Lord."
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| Dating in Sausalito |
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| Engaged at Castello Di Amorosa |
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| Married at Grace Church of Napa |
Saturday, July 8, 2017
One Last Turkey Sandwich
Being only a few days away from moving to Stanford for my bone marrow transplant, yesterday I had what will hopefully be my last turkey sandwich at Sutter Vallejo's Cancer Center. For almost a year I've been eating the same turkey sandwich either once a week or every two weeks when I would come in to get a blood transfusion. I would estimate 30-40 turkey sandwiches. I remember the first time thinking how great it was to get a free meal as a patient while sitting in a nice leather recliner. Over the past year, I was cared for by the same group of nurses, who administered my blood transfusions, medication, steroids, and chemotherapy, who struggled to start my IV in my hard to find veins, who answered my many, many questions, who picked up my turkey sandwiches from the cafeteria. For that I, thank God for giving me such kind and caring nurses.
Friday, July 7, 2017
Tearing My Achilles, For Good
Leading up to my achilles injury, since the start of 2016, I had been going to my work gym 3-4 times a week, lifting weights, and riding on the elliptical machine. I felt really good, and definitely showed no signs of a blood cancer. Even after I tore my achilles, for three months I was able to get around the house on crutches, wheel around work on my knee scooter, without feeling any symptoms from my disease. It wasn't until my wife and I went away to Oregon for our niece's wedding in early August, followed up by a camping trip in very hot Livermore, that I felt regularly fatigued, short of breath, and had pounding headaches, especially after going to the bathroom. I thought it was from my achilles or the heat.
Wednesday, July 5, 2017
The Beginning
It all started on April 29th with me tearing my left achilles while playing basketball. I had surgery a week later to repair my fully torn achilles tendon. Over the next 4 months, I wore a splint to start and a walking boot which was gradually adjusted over time, got around with crutches and eventually a knee scooter, all while getting used to living life on one good foot. Everything was affected: how I showered, how I got up the stairs, how I slept, how I went to work, how I changed into my clothes, how I went to the bathroom. On July 29, I went in to see my primary care doctor for the first time in a few years after experiencing some headaches and fever. I assumed it was all part of my body reacting to being able to walk again after so many months of hobbling on just one foot.
My doctor had me get some blood tests done when I found out my hemoglobin count was 8.4, then 8.1 in a span of a couple days. Normal is 13.5-18. He then referred me to see a hematologist in early August, who had me get additional blood tests. At that point, before we got the results back, we went away on a camping trip for a few days, only to come back home later that Saturday night August 13 and have several voice messages from my hematologist ordering me to go the Emergency Room. My hemoglobin count from August 11 was now 6.7. We went to the Sutter Vallejo ER that night not knowing what to expect. I was tired, sluggish, and short of breath. That night in the ER, my hemoglobin reached an all time low of 5.8. From there I received my first blood transfusion, the first of what would be a regular occurrence in my life over the next year. So that was the beginning of it all.
My doctor had me get some blood tests done when I found out my hemoglobin count was 8.4, then 8.1 in a span of a couple days. Normal is 13.5-18. He then referred me to see a hematologist in early August, who had me get additional blood tests. At that point, before we got the results back, we went away on a camping trip for a few days, only to come back home later that Saturday night August 13 and have several voice messages from my hematologist ordering me to go the Emergency Room. My hemoglobin count from August 11 was now 6.7. We went to the Sutter Vallejo ER that night not knowing what to expect. I was tired, sluggish, and short of breath. That night in the ER, my hemoglobin reached an all time low of 5.8. From there I received my first blood transfusion, the first of what would be a regular occurrence in my life over the next year. So that was the beginning of it all.
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| My new rides at the time: 2016 Camry and Knee Scooter |
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