The following is an archive of the blog posts from my second battle with cancer…I hope that you find this archive helpful if you or a loved one is battling cancer.
Tommy is getting a second opinion this week
11/14/2006 2:20 PM – Posted by Danny
Tommy and Linda flew out to MD Anderson this morning to get a second opinion. Tommy is going to spend the next week or so there going through the tests necessary for a second opinion.
Update from Tommy about first day at MD Anderson
11/15/2006 6:05 AM
First day went fine. I had some basic discussions on my treatment. The initial ideas are to have a stem cell transplantation (after a chemotherapy regimen that will clean my bone marrow) – http://en.wikipedia.org/wiki/Stem_cell_transplant. They need to go through pathology of a new bone marrow sample before we can further discuss treatment. Tomorrow, I have a break and will spend some quality time with Linda. Thursday will be a packed day with CT scans, bone marrow biopsy and aspiration, and heart scans. My final consultation with my doctor (Doctor Anas Younes – http://shrinkster.com/k01) will be Tuesday of next week after the results are back.
I should have another update for you Thursday night or Friday morning.
Quick update about yesterday
11/17/2006 6:20 AM – Posted by Danny
I talked to Tommy last night and he said that the long day of tests went well – he had a couple of CT scans, bone marrow biopsy and aspiration, and heart scan.
He will be staying in Houston with Linda over the weekend and into the beginning of next week. He should hear more about the diagnosis and treatment on Tuesday.
I’ll probably talk to Tommy later today and post up some more news then.
One more thing – last night Amy and I went to the orientation for Team in Training for the Alpharetta area. Let me know if you feel a calling to get involved by running or walking a full or half marathon. Amy and I are doing the inaugural ING Atlanta Marathon (ING puts on the NYC marathon, so it should be a great marathon) at the end of March so there is plenty of time to begin training and for this to be your first marathon/half marathon.
Message from Tommy
11/18/2006 12:30 PM
Thursday was a packed day of testing. The people and facilities here continue to amaze me. They have such a large volume of patients going through MD Anderson and they appear to have the proper process and procedures in place to make it go smoothly and treat each patient with dignity and respect. I feel very blessed to have the opportunity to get this second opinion here at MD Anderson.
I had a bone marrow aspiration and biopsy again and this time it was virtually painless. The person doing the procedure was named Tommy. I told him that I am coming back to him next time I need to get this procedure done. He said he was a rookie, but he had over 50 procedures under his belt over the 2 months that he has done this procedure. The first procedure of the day was another CT of the entire body. The procedure was a little different than my previous CTs. They added another quart of barium (the label is “Berry Smoothie”, not quite the same as a “Smoothie King” smoothie) and a barium enema (a nice little “bonus”). My day ended with the easiest procedure, which was a nuclear heart scan (after all these nuclear scan I am starting to check at night to see if I glow).
I am spending the weekend here in Houston to process my options. The internet has been a vast resource for learning about all the new terms (ICE, ESHAP, MOPP, PBSCT, etc.). I have been emailing my nurse practitioner and probably reached my limit of questions (she said that she preferred emails for questions… she just did not know I email for a living :>). Also, Linda has a cousin that is an oncologist and he has be very helpful as an educated third party in this decision making process.
Family has come to the rescue as we are here at Houston (plenty of quality time with the Grandparents and Uncles/Aunts). This weekend we are going to take it easy and mentally recharge for next week’s visit with the oncologist to review the treatment plan. Please keep the prayers coming (especially to have clarity on the right option to choose… the way things are going is that I am talking to 3 oncologist and all 3 have different treatment suggestions… hence my extensive personal research over the past few days). All of these options have their pros and cons. The process I am going through is healthy and at the end of the day I will trust God in what decision rises to the top.
Quick update
11/22/2006 5:20 AM
Tommy and Linda got back into Atlanta safely last night – we met up and at our parents house for a Thanksgiving dinner since we will not all be together for Thanksgiving day. Tommy is going to send me more details later today on plans for the treatment. From my understanding, it sounds like the treatment will involve a stem cell transplant and a more intensive form of chemotherapy. I will post more later today with more details.
Update from Tommy
11/22/2006 12:55 PM
It was quite a week at MD Anderson. The facilities and staff at MD Anderson are top notch. As one of my doctor’s said, it is the “Mecca” of Cancer Centers. As I mentioned before, I have had 3 oncologist give opinions on my situation and I received 3 different options. After hours (days) of research on the internet, patient learning center (videos and textbooks), and the center’s staff library (research papers for free that cost $50-200 per paper if I were to get from online resources). This time for research with Linda was an invaluable process to bring peace in our treatment choice.
Of course each of the options that were presented by each physician had their own merits, but through our own research, the Chemotherapy with Autologous Stem Cell Transplant (AutoSCT) is our choice. After making the choice of treating with AutoSCT, we had to make a choice of where to get the AutoSCT performed (another tough decision). At the beginning of our stay in Houston, the oncologist mentioned that his initial thoughts were AutoSCT. Therefore, we started researching what AutoSCT was and where to have it done. The National Bone Marrow Donor Program has a database of transplant centers. Based on this registry, there were 536 transplants from June 2003 – May 2004 at MD Anderson compared to 105 transplants at Emory (largest center in Atlanta) and 92 at Northside Hospital (center used by my oncologist in Atlanta). Today MD Anderson has over 700 transplants a year and about half of those transplants are Autologous (the type I should receive).
MD Anderson has specialty centers for each of the treatment centers. The centers I worked with in Houston were the Stem Cell Transplantation and Cellular Therapy Center where the team (RNs, PAs, MD, and coordinators) for my case is lead by Dr. Elizabeth J. Shpall and the Lymphoma and Myeloma Center where the team for my case is lead by Dr. Anas Younes. Dr. Shpall has an awesome attitude toward cure and has very high expectations of my cure (I think they want to raise their cure rate with my case… she sees me as a very curable case that will respond well to the therapy due to my age and health). Dr. Younes is a specialist around lymphomia, in particular, research on new treatments for Hodgkin’s Disease (HD). At MD Anderson, all physician are required to have a balance of research and patient care. Dr. Younes does research 3 days of each week and 2 days of patient care.
After long discussions, thought, prayer, and study, Linda and I have decided to take the advice of Dr. Younes and go through 2 rounds of chemotherapy (ICE or ESHAP) followed by High Dose Chemotherapy and AutoSCT. This treatment approach is typical for recurring HD and although we cannot prove recurring HD, the treatment of HD for the second round (reoccurring or not) with AutoSCT is the most successful treatment path.
If I went through conventional chemotherapy treatment for HD (ABVD or MOPP), I would be looking at 6 months of chemo. With AutoSCT the process is:
- Induction Phase – This is when ICE or ESHAP chemotherapy is given in conventional doses (2 cycles 3 weeks apart)
- Mobilization/ Harvesting Phase – This is after ICE or ESHAP has removed the HD from the blood stream and the growth factors (and sometimes more chemo) are given to mobilize the stem cells into the peripheral blood and harvested through apheresis.
- Conditioning Phase – This is when high dose chemotherapy (e.g. BEAM) is given to wipe out the immune system in preparation of reintroducing the harvested stem cells.
- Engraftment Phase – This is when the stem cells are reintroduced into the blood stream
The overall process for AutoSCT will be about 3 to 4 months (tougher treatment, but a shorter duration):
- 6 weeks for the Induction Phase (which I plan to do in Atlanta with my oncologist in Atlanta)
- 9 weeks for the Mobilization to Engraftment Phase (which I plan to do in Houston – as long as insurance will cover)
During my stay in Houston, I will have about +/- 3 weeks in the hospital and one week where I am able to come home (the week before high dose chemo). For the remainder of weeks, I will be able to function normally (i.e. work on my laptop :>), but need to be 20 minutes away from the hospital. I will be on a special diet and restricted exposure to other people until my blood counts get to a safe range to return home. While I am away from the hospital, I am required to have a caretaker that is able to bring me to the hospital if I have complications. I will be recruiting family members (consider yourself warned :>) to take shifts during my outpatient stay in Houston.
More from Tommy about his diagnosis
11/26/2006 9:30 AM
I know that a big part of fear is the fear of the unknown. As Linda and I have been working through my diagnosis and determining proper treatment, we found some excellent resources. One society that has quality material that helps educate family and friends of a lymphoma patient is The Leukemia & Lymphoma Society (http://www.leukemia-lymphoma.org). In particular, we have found some of the educational brochures and pamphlets as a good starting point to get educated. Just in case others have the anxiety of the unknown, I have outlined some of the material that can help others understand what my disease is and how it is cured. All of these materials can be found at http://www.leukemia-lymphoma.org/all_page?item_id=4231. Here are some suggested materials:
- Diseases – (This is a link to the page that you can get to the pdf of the document or to order the pamphlet; note that below if you click on the link you will get to the online version)
- The Lymphomas: A Guide for Patients and their Families
This booklet is for lymphoma patients and their families. It will help patients and families learn about lymphoma and how it is treated. - The Lymphomas
Information about Hodgkin and Non-Hodgkin Lymphoma - Facts 2006
The Leukemia & Lymphoma society is fighting all forms of blood cancers and offers the latest information on incidence, treatment and outcomes
- The Lymphomas: A Guide for Patients and their Families
- Treatments – (This is a link to the page that you can get to the pdf of the document or to order the pamphlet; note that below if you click on the link you will get to the online version)
- Blood and Marrow Stem Cell Transplantation
Information on blood and marrow stem cell transplantation.
- Blood and Marrow Stem Cell Transplantation
Note that this the same Society that supports Team in Training. Danny (my brother) and his wife are getting involved with Team in Training to help to be part of the solution for blood related cancers like Hodgkins. You can go to their site, http://www.active.com/donate/tntga/amyryan, to see how you can be part of the solution to cancer.
Decision on treatment and next steps
11/27/2006 5:40 PM
It was a busy day getting back to work after my “vacation” :> in Houston. It was good to see the ThreeWill team in the office. Overall things are busy and we have been fortunate to have a good friend and neighbor provide us a meal that we have had the past two nights (homemade Turkey Gumbo… nice and spicy).
Today was a significant day. We officially made our choice of treatment with my oncologist in Atlanta. We discussed what was found in Houston at MD Anderson. I was a little concerned about this meeting and not sure how he would respond, but the meeting went well. He is fine with the approach and supports using Autologous Stem Cell Transplant (AutoSCT) with an initial treatment of ICE Chemotherapy (Chemo) consisting of Ifosfamide, Carboplatin, Etoposide. My Atlanta oncologist will be administering my ICE Chemo here in Atlanta.
My treatment will start Monday, December 4th and the treatment will be done outpatient on Monday, Tuesday, Wednesday, and Thursday. ICE Chemo is typically done inpatient, but recently Doctors have switched this to outpatient. Linda and I have decided to start this treatment as soon as possible. I have recently started showing some of the symptoms of Hodgkins (mainly low grade fevers, which I have had for the past few days). Also, I am having constant pain from the hip bone that has tested positive for Hodgkins.
I will be getting 2 rounds of ICE chemo and then starting the AutoSCT in Houston at MD Anderson. The second round of ICE Chemo will start on December 26th. Potentially my second round of chemo will be done in Houston so on the rebound of my chemo I am able to start the Stem Cell harvesting.
Linda and I are ready to get this process started and moving towards cure. We have quite an adventure ahead of us, but are ready and have been blessed with peace with this decision (an answered prayer). I will give another update during or after the first treatment.
Tomorrow is first day of Chemo
12/3/2006 9:05 PM
Tommy will be starting his first round of chemo tomorrow (this will be done in Atlanta). Look for another update at the end of the day tomorrow.
Update from Tommy about first day
12/4/2006 5:35 PM
Today’s treatment went very well. I received the first day of the first cycle of ICE Chemo. For today, I only received the E of the ICE, which is Etoposide. The side effects have not been too bad, I have a little nausea, but overall I was able to function well from my recliner (as most people from ThreeWill can confess to… I have been emailing the whole day).
Business has been tough lately, so I have been having plenty of distractions to how I am feeling (which is a good and bad thing). I am hoping to get some good sleep tonight to be prepared for tomorrow (I will receive all 3 drugs and bring one home as a 24 hour pump – Ifosfamide). I have some nausea medicine to help me get through the night (so hopefully it will be a good night). My next update will be tomorrow or the next day.
Second day update
12/6/2006 9:50 AM
Relatively speaking, things went very well for the second day of treatment. This time I got the full gammet of drugs. We started off with Dexamethasone and Aloxi for anti nausea drugs. Then I had Etoposide again. That was followed by Carboplatin and then I received a pump at the end that contained a 24 hour drip of Ifosfamide mixed with Mesna (to protect my bladder from the Ifosfamide).
In terms of side effects, I have been very fortunate. I have been attentive through the treatment and after treatment (so attentive that I only got 3 hours of sleep, at best, last night). The thing I hope to avoid is the vomiting. I have had bouts of nausea, but “knock on wood” nothing has lead to vomiting. I have the traditional mouth issues with dry mouth and things having a metallic taste (but no mouth soars at this point, doing my best to clean my mouth after every meal and starting mouth rinses with a special rinse used during chemo). I have mild headaches that are bearable and the only other issue was 30 minutes of heavy hiccups (which I remember having occasionally with my last chemo).
I go in at 1:30pm today to get my last day of chemo for this cycle (same as first day, just Etoposide). If things keep going as well as they are, I hope to be back in the office on Thursday.
How things are going – update from Tommy
12/14/2006 6:30 AM
It has been a week now since I had my last chemo treatment. Relatively speaking, things are going well after the first treatment. I made it through without any major nausea (kudos to the drug developers for nausea medications). I have an excellent chemo nurse that is administering the chemo drugs. She made a point to be available (changing her schedule) for all 3 days of my treatment. She is a Catholic Nun and runs the chemo room like she has been doing it for 30 years. We have become good friends with Nurse Nancy. She is always coming over to my chair to tell a story and is doing her best to make this a smooth experience.
After receiving chemo, I have been getting daily Neupogen. My last dose will be tomorrow (Thursday). The last 4 shots have been done by Linda at home. I tease her a lot about how she administers the shots (letting her know that the nurses at the doctor’s office are more gentle with the shots). She is now teaching me how to give my own shots J.
As predicted, I was in the office the next day after chemo (Thursday). I was able to get in almost a full day of work and I have been going to work since then (the proud male ego makes me want to emphasize that point). The major side effects that I experienced this time have been urinary track problems, indigestion, and bone pain. On Thursday night I was awaken 6 times to urinate a half of a cup of shards of glass (at least that is what it felt like). I went to the doctor the next day and they found microscopic levels of blood in the urine and put me on an antibiotic, Cipro, and a bladder analgesic, Pyridium (which resulted in a nice bright orange color). In terms of indigestion, I have had extreme chest pains 30 minutes after eating (sometimes even after very small snacks). I have changed my diet to bland foods, but I am constantly tweaking the volume of food to avoid the indigestion pains. I have been on Zantac and this has reduced acid reflux, but not addressed the chest pain. I have tried to reduce the amount of prescription drugs I am taking (it is getting so complicated that Linda is making a medication checklist – it is great to have a nurse as a wife!), but I broke down today and had a prescription of Prevacid called into the pharmacy. My last issue that I just started dealing with this morning has been bone pain (we think this is due to the neupogen, which stimulate stem cell growth that occurs in the bone marrow). I woke up this morning with pains in my left hip (one of the areas where the cancer has metastasized). This pain had made the morning difficult to concentrate. By mid morning, I called the doctor and they called in a prescription for Lortab. I could not take this at work, so I was a bit squirmy and had to stand to relieve pain or knell on the floor instead of sitting in a chair. I am on Lortab now (so be warned that this post is under the influence). It is making the pain bearable (which has moved to my sacrum now, another area that the cancer had metastasized), but not sure if it has taken enough of the edge off to allow me to sleep.
Everything is relative and relatively speaking, I am feel that I have rebounded well from the first chemo and have been able to keep my life fairly routine. My exercise has suffered through this (one walk with Linda and one walk with Chad, Associate at ThreeWill). My energy level is good enough to work and fortunately, I can sit for the majority of the day while at work. I think the 8-10 hours of sleep has helped my energy level (I normally get 7 hours or less of sleep). The only tough day so far was the Christmas Party over the weekend. I had to stand quite a bit and socialize (which can be draining). Although it was exhausting to go to the party, it was well worth the effort. We had an excellent facility for the party, Bahama Breeze, and I always enjoy seeing spouses and families of ThreeWill Associates. My favorite part of the party is to see the kids dance to the entertainer’s music. We did not have as much dancing as last year, but Kendall and Alden did not let me down (they were “cutting the rug” by the end of the party).
Next steps are to have another round of chemo this coming Monday (December 18th). This will be my last round of chemo in Atlanta. I will be going to Houston the first or second week in January for my 3rd round of chemo. I will be in Houston for about 9 weeks for the Stem Cell Transplant. That is it for now and most likely the next update will be shortly after round 2 of chemo.
Update on second round
12/19/2006 1:45 PM
It has been a while since my last post. Since that post, I have been doing quite well. On Wednesday, it was a tough night with bone pain and got about 3 hours of sleep. The Loritab took some of the edge of the pain and I was very grateful that I had a narcotic called in the pharmacy (otherwise I would have been up the whole night). The pain went away the next day and since then I have felt extremely well. I talked about this bone pain with the PA at my doctors office and she confirmed that the bone pain did come from the neupogen shots. Since Thursday of last week, my energy level has been excellent and I have had minimal side effects (It is amazing how good normal feels!). Overall, this first chemo has gone quite well.
I am now onto my second round of chemo. I started on Monday and will be done on Wednesday. Yesterday I responded well to the chemo. I was running errands and holding conference calls with the ThreeWill lawyer to update some standard templates (you have to be feeling good to have those conversations J). Today, I got the full gamut again (all ICE drugs and anti-nausea drugs). I am back at home with my pump of Ifosfamide. I will pushing the liquids big time so I am not “peeing glass” again (avoiding this sensation again is quite a motivator to push the fluids).
We think this round will be my last round of chemo in Atlanta. I get a PFT on Thursday. This is the last test needed to get approval for the Autologous Stem Cell Transplant (AutoSCT) – which can take 3-4 weeks for approval. Based on timing of getting test results to insurance, it looks as though I will not be out to MD Anderson in early January and my return will be late January to early February. I am also going though restaging of my Hodgkin’s over the next few weeks. These tests will be a PET and CAT Scan. We are praying that these tests show no measurable cancer and if so, I will be in good shape for my AutoSCT in Houston.If I do not post again before Christmas, I wish all my blog readers (J) a Safe and Merry Christmas!
Going to Houston!
12/28/2006 8:05 PM
It is more than a week out from my second round of chemo. It has been a similar experience as my first chemo. I had the urinary issues, but addressed them early and was able to sleep through the night with the bladder analgesic. I had two rough nights (Wednesday and Thursday of last week) that was less than 3 hours each night. Like clockwork, my bone pain has started today and I will be taking my Loritab tonight to get through the night. Today, I went in to get my blood counts done. The neupogen has helped keep my white counts where they need to be and my red blood cell count was low for the first time. I received a shot at the doctor today to boost my red count.
Determining my next steps has been challenging over the past two weeks. I was in a situation that I either get a 3rd cycle of chemo in Atlanta and the go to Houston at the end of April to get a 4th round to be used for stem cell mobilization vs. go to Houston on January 5th for my 3rd cycle of chemo and use that for my stem cell mobilization. Of course, I have been voting for the second option (so I can avoid an extra round of chemo and shorten the overall time for treatment). The insurance company has not made it easy to make this better option feasible. Through several phone calls and emails, we have got approval from insurance to go out to TX on January 5th. I just got the approval today!
Linda and I are determining if I will go solo or Linda will be able to join me. Most likely I will go out first and she will come later after I am done with my 3rd round of chemo. It is very tough on Linda because she wants to be in two places at the same time.
Oh, one other piece of news… I have a new haircut J (and it looks a lot like that smiley face). You will probably see a picture up on this blog site soon. Danny (my brother) is itching to get a picture up on this blog site. On Wednesday/Thursday of last week I started losing my hair. I was becoming a nuisance and it was difficult to sleep with the sensitivity of my hair on my pillow, so I solved that problem on Monday. My daughter, Madeline, knew that I was going for a haircut, but when I got back the look on her face was priceless (it was quite a change for her).
I want to thank everyone who is praying for our family, we have receive many cards and letters over the past few weeks. Also, a big thank you to the Wilhelm, Sosebee, Whitaker, Weeks, Cochran, Shugart, and Ryan (Danny/Amy and Mom/Dad) Families for the wonderful meals that where provided during the days of chemo. This was a big blessing! A special thanks to Lauren Whitaker who organized the schedule for the meals.
Well, the next post is probably going to be from Houston next week. I am hoping to have an uneventful time between now and then.
Houston Trip Scheduled for Tuesday (January 2nd)
1/1/2007 2:47 PM
Well, late Thursday (of last week) I found out that I was approved by insurance for the Stem Cell Transplant. I was pushing hard to get the wheels turning so I could avoid the extra chemo session. Fortunately, I was blessed with the team in Houston doing all they could to make this happen and, with a few phone calls to the insurance company, I was set to go to Houston for the first week in January. Although, things were not looking promising on Friday (it did not look as though the stars would align).
The insurance coordinator was on vacation Friday and the day before did not send the approval letter to MDACC (MD Anderson Cancer Center). Meanwhile, the person at MDACC (that was coordinating my admittance to MDACC) was having his last day of work and could not be found Friday morning. I worked my way to a person at the insurance company that could get to my approval letter to MDACC and finally got the information sent to the Stem Cell Transplant Center.
After pushing that through on Friday, I found out that my scheduling coordinator (the person that sets up the appointments), Stacy, was on vacation. While on vacation, she checked her email from home knowing that I was trying to get into MDACC the following week. It was a nice surprise to get a phone call from her on Friday. She said that my first appointment would be on Wednesday and that I should fly in Tuesday evening. A strange as it may sound, I was excited to hear that everything went through and that I would be starting the process for my SCT on Wednesday.
Over the weekend, Linda and I made plans for next week. Linda will be joining me next week and the kids are going to Marietta Grandparents for the rest of their winter holiday.
As I noted in the last post, I have a new hairstyle. I thought that a few people would get a kick out of my new haircut… so I have posted a picture to the photo library for your viewing pleasure…
Starting Mobilization Chemotherapy
1/6/2007 8:46 AM
Linda and I arrived in Houston Tuesday night and are staying at the hotel connected to MD Anderson Cancer Center (MDACC). From Wednesday to Thursday, I had 17 appointments that ranged from blood tests, to scans, to doctor visits. It was a whirlwind of appointments. Especially on Wednesday when I started with my first appointment at 9:45am and the last one was over at about 7:00pm (with no breaks between appointments). Linda was a trooper and had to spend endless hours in waiting rooms.
The tests were, for the most part, uneventful. I got comments again about the hardness of my bones during my bilateral bone marrow aspiration and biopsy (the PA said that she was going to ask her husband for a back massage that evening). The only procedure that had some complications was my CVC. They tried to thread my new catheter with the line of the old port, but the vein was not large enough to support the large gauge double lumen line. This created pain that radiated up through the neck to the ear (a very strange sensation).
On an extremely positive note, the results received to date on the tests have all been positive (i.e. good results)! The PET scan and CT scan did not show any signs of cancer. The only test that did not come back was the bone marrow tests. The doctor says that if this does come back positive they will most likely still use my stem cells for the transplant. Either way, I am praying for clean bone marrow.
Linda and I continue to be amazed at the services MDACC provide and how things are coordinated. Also, we consistently hear from other patients about how great MDACC is. We have heard several stories about how MDACC saved their life or a life of a family member. We also hear how kind the staff is to the patience (which is what we have also experienced).
As I am writing this blog entry, I am starting my first day of mobilization chemo. I have 3 pumps running with the chemo drugs. I will be in the hospital for 4 to 5 days for this treatment. After that I will go outpatient until I am ready for apherisis (used for stem cell harvesting). From the start of mobilization chemo to the time I am done with stem cell harvesting is 15-20 days. I hope to be back in town for one week (4th or 5th week in January).
Linda is on her way back to Atlanta to pick up the kids from Mom and Dad’s house. The kids start back to school next week. It was tough to see her go, but I have a pretty nice setup in the hospital and the kids need to see their mom. My laptop, movies, books, tv, etc, will keep me busy and distracted.
Mobilization Chemo almost complete!
1/9/2007 5:00 PM
This round of chemo has been a little more challenging than previous chemos. This time around I had constant drips of chemo along with constant drips of saline solution. My lack of energy has kept me away from the computer and that is why I have not given an update since starting the chemo.
I had similar side effects as before, but my energy levels were very low. I am hoping to avoid the “peeing glass” this time around (they have heavily hydrated me – to the point I have to take a bathroom break every 1-2 hours… at least this gets me out of bed :>). While in the hospital, I must do daily walks (3 x 10-20 minutes) – of course I do 20-30 minutes, breathing exercises (not keeping up with these as well), and salt and soda rinses every 2 hours to avoid mouth sores (which I have done well by combining with my bathroom trips). I am known as the “lapper” in the hallways (here is a picture that I took of myself with my cell phone before my first walk – Tommy with IV Stack). I like to go at a fairly fast clip, so I have to take cut throughs when traffic backs up in front of me. I am one of the younger patients (many upper 40s to 60), so I have a little advantage over the average patient. I am very fortunate to go through this at my current age and overall health.
All the patients on my hall are either going through mobilization chemo, high dose chemo, or recovering from their stem cell infusion (the whole floor is devoted to the Stem Cell Transplant hospitalization procedures). I have talked to some high dose chemo patients and they seem to feel the worst, as expected. I hear from nurses and patients that the day someone gets their stem cells reinfused is considered their second birthday (since without those stem cells they would not live; therefore, the stem cells give them another life). Crazy to think about, but gives it context to the seriousness of the treatment and the miracles of science. I praise God for being alive at a time of hope for cancer cures!
This afternoon they just pull my last chemo drug from my IV stack and I am starting to get some energy back. Not sure if mentally that I feel better because they are not pumping poisons into me or if stopping the infusion relieves the strain on my body (probably a little of both).
Currently, I am on bladder protectors and tomorrow I go home (i.e. hotel) with a 24 hour pump of saline mixed with anti-nausea meds. Nausea has not been an issue for me (another medical development that I greatly appreciate). I am not eating like I usually do (probably 1/3 of the calorie intake that I usually have). I am becoming a Lime Gatorade fan (it is the easiest fluid to get down). The doctors approve, so I will be stocking up on Gatorade when leaving the hospital.
Today my father is on his way to MDACC. He should arrive around 6-7pm. I am looking forward to seeing a familiar face. Dad will be helping me find long term stay in the Houston, TX area (this will be necessary when I am in recovery after leaving the hospital). I will be in either an apartment or extended stay hotel where home health nurses will visit.
Well, I have completed one significant milestone in this process of Stem Cell Transplantation. The next step is to take growth factors (neupogen), to stimulate extra stem cell production. I will be on a double dose this time and they expect that my body will be able to donate stem cells around the 20th of January (plus or minus a few days… and of course I expect it to be sooner :)).
This should be enough of an update for now. I have more to share, but will reserve for a later update. Thanks for the continuing prayers. Also, I see Amy Ryan has arranged another round of meals for the family. Thanks Amy! Also, I would like to thank my brother Bobby for the parking and hotel that he provided for the trip out last time (that was an extremely helpful donation).
Take care everyone!
Apartment Hunting
1/14/2007 3:21 PM
My recovery from the chemo used for stem cell mobilization has gone quite well. During my chemo in the hospital I felt worse than during my ICE chemo, but since I have left the hospital I have bounced back better than previous chemos. A significant difference has been the amount of hydration I have had. I was constantly (24 hours a day) pumped with saline during the chemo infusions and on top of that I was drinking 2 liters a day of fluids. Since I have responded so well, I have kept up the hydration and I have 6 x 600ml of fluids a day (3.6 liters for those of you that are mathematically challenged) – not including liquids from tea or soups (which I have become a huge fan of).
Since I have left the hospital, the majority of time has been spent preparing for my return stay when I receive high dose chemo and reinfusion of my collected stem cells. As I have been making my way from the hotel to MDACC, I have seen some of my chemo buddies in the hallways. I have noticed some of them in wheelchairs due to being winded from the walking (and having to wear masks everywhere you go does not help). It has been strange feeling well and then doctors advising you of the exhaustion you feel with low blood counts. I have been walking outside for 30 minutes daily (except for today) to keep some sense of exercise. Today I have felt a bit of low energy (so I have had to watch football all day – oh well). The only side effects that I am experiencing are the dry mouth (with minor mouth sores) and bald head (which I am growing accustom to).
As for apartment hunting, that has been time consuming task of finding corporate apartment brokers, looking at properties, and comparing notes. We took over 500 pictures (note that in one picture I was cheating by not wearing my mask… Linda will not be happy) and I created a SharePoint site to compare the apartments, and a Live Map with pushpins of the locations to get perspective of what areas of town the apartments were located. Today, I had a web conference with Linda to “present” the findings. We narrowed down to 2 apartments with an alternative choice if the 2 do not work out. You know I am itching to get back to work when I am creating SharePoint sites on the side J.
Tuesday, I go in for a blood count check. Hopefully the counts are good enough to start the stem cell collection. I am interested to see what I will be like to go through apheresis. This will be new territory for me.
Blood counts are still dropping
1/16/2007 7:00 PM
I went in for blood counts today and found out that my counts are still dropping. The platelets dropped the most and are currently at 99K (normal range is 150K to 350K). Also, the red blood, hemoglobin, and hematocrit were low as expected. Potentially, I will have a platelet infusion if the platelets continue to drop. Based on my counts, most likely Monday will be the first day for stem cell collection. I am doing my best with nutrition (well not perfect in this area), hydration, and medications (self administrating my neupogen shots twice a day – which I am starting to get use to doing – I should get dad to take a movie clip of this J) to increase my odds of rebounding my counts. Dad and I had lunch at Prego today (thanks Bobby). This restaurant is not crowded during the week for lunch, so we decided to eat out during lunch vs. dinner. Dinner is usually soup made in the microwave at the hotel. Typically, I stay in the room for part of the day and then the other part of the day Dad and I work from the lobby of the hotel.
Tomorrow, we hope to finalize the apartment arrangements. Looks like I will be coming home in the middle of next week and will be back in a week… so we are targeting to move into the apartment on 1st or 2nd of February. It is quite a challenge to schedule things when you depend on the variability of how the human body responses to chemo (among other variables – like bed availability in the hospital, etc.). Looking to turn around these counts at my next visit (which is scheduled for Friday).
Almost a trip to ER last night
1/17/2007 4:36 PM
What a shocking title… Well last night my bandage over my CVC line had blood that spotted about a 1/3 of the bandage. I called the “on call” nurse and described the situation. Based on my low platelet count and that the bleeding appeared to stop, I was ok to wait until the morning (I have some good pictures of this, but I thought that I would keep this a G rated site).
We went into the clinic first thing in the morning to change the bandage. Even if I did not have the bleeding, I would have been going in for a bandage change due to an allergic skin reaction to the bandage cover. Upon looking at the CVC insertion area, the nurse(s) decided that there is a possibility of infection due to redness around the CVC stitches (again I have pictures, but will share only on request). Since the area was already disinfected, they are going to have me come back in 48 hours to take a culture. If the culture is positive, I will need to stay 7 days for special daily bandage changes. Hopefully, the area will test negative… I was planning to come home Tuesday and this would extend me to Friday (potentially cutting my return to home shorter than planned).
I have some contingency plans to insure a week at home with family and the team at work, but it will be easier to pull this off if I do not have an infection (so those who like to have some specific things to pray for… the healing of my CVC insertion area is a good candidate J).
Besides the CVC insertion area, everything else is going well. I am continuing to take my 3 antibiotics, twice a day neupogen shots, and once a day heparin flushes. I have weaned my way off the constipation and antacid drugs (I could make some jokes about that, but I will leave it up to the guys in the office). The bone pain has started. More of a nuisance at this point and I am staying away from pain medication (so I can detect the pain around the CVC line).
Dad and I had a good time playing cards last night (forgot to get a picture… will get one next time). We are trying to get more exercise due to the high carb diets that we are on. We are eating well… getting plenty of time on the computer… and making sure we reserve some time to have some fun.
Counts are on the rebound!
1/18/2007 8:45 PM
Some great news this morning… my white counts are on the rebound, which is an indicator of stem cells could be ready for collection. Also, my bone pain has hit a new level (convienently found this out at 2:30am this morning) in several areas – another indicator that stem cells could be ready.
Another milestone today… we settled on the apartment. Happy to get this under the belt. The apartment is great… across the street is Herman Park (plenty of walking trails).
Tomorrow, I have a 7:30am appointment to check my blood for levels of stem cells, if it is high enough >10 they will start apherisis. If I am lucky, this will be done in one day. Also, I have an appointment to check the CVC infection. I am still praying that this negative (so I can come home early next week).
FW: Started Apherisis
1/19/2007 12:52 PM
Update from Tommy…Danny.
—————————-
—–Original Message—–
From: Tommy Ryan
Sent: Friday, January 19, 2007 3:50 PM
To: Danny Ryan
Subject: Started ApherisisMy counts for CD34 were 134 and needed to be above 15. I will post a
blog tonight with more detail. You can pass onto the team.
Tommy.
——————–
http://www.threewill.com
(sent via mobile)
Apheresis is complete!(?)
1/19/2007 9:30 PM
Today was a VERY successful day. It started at 6:00am giving my neupogen shot and finished at 6:00pm when I left the apheresis room. The attending physician said that based on my blood tests this morning (drawn at 7:30am) indicated that I have a 99% chance of collecting in one day. Later that morning I found out that there was no infection around the CVC (an answered prayer).
The blood counts looked very promising, the platelets are turning around, my white cells are at safe levels, and stem cell count (CD34) was at 134 (today I heard that it needed to be at least 15 to start the apheresis).
The apheresis process was better than expected (here are some pictures: starting, during, and end). It took 3.5 hours and only side effects experienced was a lowering of body temperature (which gave me some relief on the fever) and loss of energy. They want me to return on Monday to switch out my current CVC for another CVC that will be used for my high dose chemo. I do not know when they are going to let me return to home, but targeting Wednesday to drive back with my dad (but no promises… knowing your schedule in advance is a challenge and I push this to the limit with my questions and emails :)).
The other good news that I received is that I can stop my 3 antibiotic pills that I take each day and can stop the twice a day neupogen shots (…and the crowds go wild…)!
This afternoon I started a low grade fever 99.6-100.1. A side effect of neupogen is low grade fevers, so we hope that is the reason for the fever. It has been a long day and glad to be finished. I will be checking my temperature in the middle of the night to make sure it does not reach 101. If it reaches that level, I need to go to the ER (Dad is praying that this does not happen so he can have a full night of sleep… long day of waiting in waiting rooms today J… ask Linda how fun this is).
That is it for today. If you are curious on how Peripheral Blood Stem Cell collection works, click here.
Fever broke last night
1/20/2007 7:31 AM
Quick update… fever broke at 2:00am last night. Feeling much better this morning… headache is gone also (and no neupogen shot this morning!).
Researching High Dose Chemo Regimens
1/21/2007 3:30 PM
I thought my tough decisions were over when I decided to have a Stem Cell Transplant vs. just salvage chemo. Well, I have another fork in the road and the decision is on the regimen used for high dose chemotherapy. The options are BEAM (Carmustine, Etoposide, Cytarabine, Melphalan) and a clinical research study(Gemcitabine/ Busulfan/ Melphalan).
From my current understanding, BEAM is a stardard high dose chemotherapy regimen used for refactory/reoccuring Hodgkins and the goal of the clinical research study is to find the highest tolerated dose of gemcitabine that can be given with bulsulfan and melphalan (used for treatment of refactory/reoccuring Hodgkins).
It appears that my physician wants to move forward with the clinical study. Meanwhile, I want to step back and make sure that going through the clinical study is the “right” thing to do. At first glance, BEAM appears to be a better “known” path to cure and the clinical research study is a most likely path to cure and a way to further research to better cures (I will need to have some questions answered by my physician to know why I was picked for this study vs. using the standard regimen).
As a father, husband, founder of a company, and a spiritual being, I am challenged to know what the “right” thing is. Over the next week, I will be researching, consulting, discussing with love ones, and praying to receive peace again with knowing what is God’s will for me. I have some time to process my decision. I am researching today and early this coming week to have more facts that will help me make an educated decision.
Raising funds for better cures
1/21/2007 4:00 PM
I wanted to thank the Team in Training Runners/Walkers. To date, greater than $10,000 in funds have been raised for the Leukemia and Lymphoma Society. Way to go team!
Danny and Amy Ryan – http://www.active.com/donate/tntga/amyryan
Bobby Ryan – http://www.active.com/donate/tntga/tntgaBRyan
Mom Ryan – http://www.active.com/donate/tntga/tntgaERyan1
Dad Ryan – http://www.active.com/donate/tntga/tntgaFRyan
Mom Melear (Amy Ryan’s mom) – http://www.active.com/donate/tntga/tntgaJMelear
Atlanta here I come!
1/23/2007 7:00 PM
I am driving (actually Dad is) to Atlanta from Houston as I write this. I had my last appointment this morning before I need to come back for high dose chemo. We got on the road at 2pm CST and are going to stop in lower Alabama tonight.
I have received nothing but good news since Friday. It turns out that the stem cells collected on Friday were enough (5.3 million) for my transplant. The clinical nurse, Brook, said that it is not common for this to happen (of course, I like to exceed expectations in everything I do :>). My counts have also done well since Friday. As of today, white cells are normal, platelets are up to 130 (almost normal), red blood count is still hanging out at 3.32 (which is the last thing to adjust), and magnesium is on the low end of normal.
It was a big day for Dad today. He had to change my CVC bandage (in medical terms – dressing). He was a little nervous (had dreams about changing bandages), but passed the test.
Well, I had a chance to meet with my physician, Dr. Shpall, to discuss my high dose chemo regimen. After discussing my progress, we decided that the Clinical Trial was not necessary and that it would be overkill (it is more aggressive than BEAM and would require at least one more week in the hospital). High dose BEAM is not a trivial chemo (at least 2 weeks in the hospital), but this study is more for unresponsive disease. My Hodgkin’s has responded very well so BEAM will be more appropriate.
Going into the meeting with my physician, I had chosen to request BEAM. I arrived at this decision after several conversations, research, and of course… prayer. I am at peace with this decision and I was amazed in how well the conversation went (I think the preparation and the Holy Spirit had a part in this :>). …another significant decision under the belt (a big relief).
MD Anderson has been a home away from home. I have met many brave and high spirited individuals and families. At times MDACC can be frustrating (i.e. hurry up and wait), but overall this is the place to be. My prayer list has grown and I have been praying for “big” things to happen based on the stories I have heard. This experience has been quite a blessing… new friends, time with Linda and my Dad out in Houston, new opportunities at work in my absence, a strong body that has responded very well to treatment, and an overwhelming response from friends, family, and colleagues that are supporting me with prayers, emails, meals, and financial support… like free meals in Houston:> (along with many other blessings).
I am excited to get back home to see the family. I have been in Houston since January 2nd and look forward to some hugs from the family. Also, ready to see my other family (the team at ThreeWill). My return trip is scheduled for Thursday February 1st. I will be admitted back into the hospital on the 2nd to get the big guns (BEAM). They offered me to come back February 16th, but I am too anxious to get this behind me. Also, I am still at risk for infection and want to be extra careful before returning (which includes a special diet, washing my hands constantly, and wearing my mask – which gets old quick).
Soon it will be my turn to drive, so I will sign out for now.
Visitors and Primary Caregivers
1/23/2007 9:30 PM
I have setup a calendar for those who want to visit Houston and stay in the apartment while I am going through treatment. The apartment (front and side views) is 2 bedrooms. I will be in the hospital for about 2-3 weeks, so it will have room for a primary caregiver (responsible for my care) and visitors (anyone that wants to visit for a day or two). When I am discharged from the hospital, I will be staying at the hotel and can take in guests (but the arrangements might not be as good – i.e. sleeping on the couch). Also, if you want to stay in a local hotel, I can get highly discounted rates as a patient of MDACC (usually $100 off the standard rate).
I have provided a calendar for this site call Treatment Milestones (no longer available since I have moved the blog location). I have penciled in my primary caregivers (to be confirmed) and if you want to visit (February 3 – March 8), please add you name for the date(s) you want to visit. This can be done by going to Treatment Milestones and:
- Click “New” at the top of the calendar
- In the new appointment, first set this as an “All Day Event” by checking the checkbox next to “Make this an all-day activity that doesn’t start or end at a specific hour.”
- Next, type into the “Title” textbox “Visitor – <your name>” (i.e. Visitor – Bobby Ryan) and enter the start and end of your visit in the “Start Time” and “End Time” dates
- In the “Description” textbox, put any details about your visit that I need to be aware of
- When you are done, click the “OK” button and confirm that your date was set in the calendar.
I will have a car at the hotel. So, if you are flying to Houston, let me know and if possible, I will arrange for the primary caregiver to pick you up at the airport to save on taxi fair.
Note that I have set up the hotel to make it convenient for the caregiver (i.e. there is a shuttle to MDACC and it is located near a very nice park and museums) and other guests. It will be nice to see familiar faces as I am going through treatment and recovery. As people sign up for dates, I will get with you to discuss details.
Back home to rest before High Dose Chemo
1/25/2007 9:12 PM
I am back in Atlanta (arrived yesterday). Dad and I drove back and stopped in lower Alabama on the way. It was great to see the family and enjoyed spending time at work today with the gang. I will give a more detailed update this weekend. A full day at work has worn me down…
Preparing for return to Houston
1/27/2007 10:41 AM
I enjoyed the two days back in the office. A little awkward with wearing a mask, but it will be best not to start high dose chemo with a cold (the doctors were surprised to hear me say that I wanted to go back to work and were hesitant to give their approval). The team at the office is doing well. Business is picking up and some exciting opportunities are coming down the pipeline (plenty of things to do when I return).
The house looked great. Tim Coalson, his sons, and 2 guys from bible study came over and did a bang up job on cleaning the yard (here are some pictures – front yard, front walk, and back yard). I think Linda’s expectations of a clean yard has been raised a few notches… thanks Tim J. Also, Jason Dimm stopped by this weekend and replenished by supply of germ-x (antibacterial gel)… I think I am set for the year.
Linda and I have set up all the primary caregivers today and are setting up the flights. To make things convenient, Linda and I are driving down to Houston together and Linda will fly out at the end to drive back with me. It is great that I have the opportunity to have my Mom and all my siblings out to visit during my hospital stay and recovery. Also, Linda will be coming out during the middle of my stay with Alex for a week (during Alex’s winter break). Other visitors are welcome (only restriction is that children must be 12 or older and that you are in good health).
I am doing well and should be recovered by the time I arrive in Houston. My red count is low, but mentally I have had enough of a break to be ready to get the big guns. Ready to get this “party started” and over with… so I can get back to normal.
Posted some pictures from home
1/28/2007 6:08 PM
It is great to have some time home with the family. Time is flying by and before I know it I will be back on the road to Houston. When I arrived home the kids surprised me with a poster and candy. The trip home with Dad was not too bad and it was a test drive to see if I would be up to driving out to Houston for my High Dose Chemo. Linda and I have decided to take the trip in the van (so we can take extra stuff to the apartment). We will be taking off this Wednesday morning and stopping west of Mobile AL. We will be moving into the apartment on Thursday the 1st and I will be checking into the hospital.
On the road to Houston
2/1/2007 6:27 AM
Linda and I are on the road to Houston for my High Dose Chemo and Stem Cell Infusion. During our trip, we listened to a very informative podcast on Stem Cell Transplantation. Dr. Keating gave a great overview of the process, choices to make and why, and the typical side effects (my favorite one is the impact on intellectual function, in particular multi-tasking and calculations… I am doing some research on a new career path – toll booth operator looks promising or maybe I can be a Starbucks barista… they have good benefits, but not sure if I will be able to remember all the drink combinations). Seriously, if you are interested in getting a good explanation of the Stem Cell Transplantation Process, this is the best explanation I have heard to date.
Today, we should arrive in Houston by 1pm CST. We will quickly unpack and get over to the clinic. I have to run through a few tests/scans today to get a baseline before high dose chemo. I will also be timing my average Sudoku puzzle completion time before and after high dose chemo…
Stem Cell Transplantation – Making an Informed Choice Monday, February 27, 2006, 10:20:39 AM
This free telephone education program took place on Thursday, Feb. 2, 2006. The program featured Armand Keating, M.D., professor and head, Department of Medical Oncology and Hematology Princess Margaret Hospital/Ontario Cancer Institute, Toronto, ON. This program was sponsored by The Leukemia & Lymphoma Society in collaboration with the National Marrow Donor Program and was supported through an educational grant from Amgen.
Arrived in Houston
2/2/2007 9:53 AM
We have arrived in Houston. Linda loves the apartment and wishes that I could stay at the apartment vs. go to the hospital tonight. We are all settled into the apartment and within the hour going over to MD Anderson for my appointments starting at 1:30pm CST. I have appointments all the way until I check into the hospital. I have 6 hours to back out of the high dose chemo… (it sure would be nice to just hide out in TX for 6 weeks without going through chemo… hummmm).
Address until March 10th
1 Hermann Museum Circle
Apt 3086
Houston, Texas 77004
Checked into hospital for high dose chemo
2/3/2007 7:05 AM
Yesterday, I did the routine blood work and had a visit with my physician. I got some not so good news yesterday about HLA typing of my siblings. With HLA typing you receive one gene from each parent. With that, there are four unique combinations that can result from each variation of gene combinations. For example a father could have a,b and mother c,d. From that the four unique combinations would be a,d; a,c; b,c; and b,d. As “Murphy” would have it… each of the four Ryan children has their own unique combination of our parent’s genes (I thought we were all unique…).
This news was a little sobering and makes this AutoSCT Transplant even more important when it comes to my cure. Fortunately, my bone marrow involvement was very responsive to the ICE treatment, which makes me a good candidate for AutoSCT. If my bone marrow involvement was not responsive, then I would possibly get an AlloSCT (Allogeneic – donated by someone other than me). With an Allo it is best to get a sibling (or twin brother… which I don’t have… or do I?) donor. If that is not possible, then you get a MUD (Match Unrelated Donor). If the AutoSCT does not produce a cure, my escalation strategy is AlloSCT. Potentially, my children will be typed for donation, but we will cross that road when it comes (my focus is to achieve lifetime cure with AutoSCT).
I checked into the hospital last night for my BEAM (here is a link to mini-BEAM, same chemo drug list with lower doses) high dose chemo and reinfusion of stem cells. They started hydration last night and as I am typing they are starting my drip for the first chemo drug, Carmustine. I guess there is no turning back… Linda and I compared this to being pregnant or at the wedding alter. You get to a point that there is no turning back…. I am ready to take on the last leg of this treatment (with support of caregivers, doctors, nurses, other hospital staff (especially the people that bring me food), family, friends, and a last by not least…God, who is present through the people who are part of this cure).
Day -6 Completed
2/3/2007 3:31 PM
My first day of chemo has gone quite well. I did not experience any of the infusion side effects (sinus pain or jaw pain). I just have the dry mouth starting (and the I have poison in my veins feeling – J). I am ready for Day -5 through -2. During these days, I will receive Cytarbine and Etoposide every 12 hours.
I am taking my walks again and giving Linda a good run for her money during the walks (I cruise in the fast lane). I have seen some of the nursing staff from last visit, but none of my chemo buddies. I found another blog of a person (Darrel Hale – See “Other Cancer Blogs” on the left navigation) that has reoccurring Hodgkin’s and he is going through the same regime as me (ICE then BEAM). He is going through ICE now. Good to see another person’s experience that is similar to mine.
We are looking forward to the Super Bowl tomorrow. Linda is bringing in some popcorn for me…
Starting Day -5
2/4/2007 8:49 AM
I finished the first dose of Cytarbine and Etoposide this morning at 5:30am, I will get my other round tonight at 5:30pm tonight. Last night was a little rough about 2.5 hours of sleep and 3 hours (off and on) of just closing my eyes to rest. Hospitals are not the best places for sleeping (especially with the lines connected to you, nurses coming in every 2-4 hours to take vitals or change bags, and last but not least the chemo drug side effects).
Linda has just entered the room. I will post later today or tomorrow.
Starting Day -4
2/5/2007 5:21 AM
Day -5 was kicked up a notch… I got my 3 walks in, but it was a challenge. Getting 2 chemo drugs twice a day is a challenge. That being said, I am doing well – no mouth sores or vomiting (what they constantly check for). As I explained to others, the way I feel is hard to describe. I have drugs that block the receptors which trigger your brain that you have something “unfriendly” in your body and cause you to vomit. Those drugs appear to be doing well, but I have the energy level and overall feeling of a flu or food poisoning without the vomiting (so feeling relatively good J… everything in life is relative).
Tonight will mark my half way mark for my chemo. I am looking forward to leaving the hospital to get into the apartment. I am doing my best to do everything needed to make this visit as short as possible. They say that typically you are in the hospital for about 2 weeks after you get your cells infused, which for me is this Friday. I hope to cut those 2 weeks short.
Day -4 Update
2/5/2007 5:19 PM
I am just about to start round 2 for the day. I have been retaining fluid, so they gave me lasix to drain the fluids. Within 30 minutes I passed about 2 liters (that was pretty wild). I gained 5 pounds of fluids in 24 hours… tomorrow we will see if it was all liquids (I think some of it is long term storage).
Day -3
2/6/2007 4:04 PM
I have passed the half way mark today in my High Dose Chemo treatments. I am very thankful that God has given me the strength to do my 3 walks each day and that my side effects are minimal compared to other patients (the nurses continue to be amazed that I am not experiencing nausea). I am not lacking side effects (mainly flu like symptoms that minimize my sleep and make the days go long). My swelling has gone down… went back down 5 pounds this morning (now I need to work on the other 20 pounds, but I will wait to do this later and not take the vomiting shortcut).
Having Linda here with me has been a blessing. She writes my daily goals on my board and inspires me to stay on top of my personal care that helps with side effects (walk 3x/day – 20 min; shower daily; salt and soda rinse every 2 hours; bacteria mouth rinse 4x/day; incentive spirometry 3x/day). The days are getting longer (I wish I had Adam’s Sandler’s universal remote – “hint – the movie Click”). Today I have started to lose my appetite, but still drowning myself in Gatorade.
I enjoyed viewing messages that I received the past few days. It is great to have the encouragement of family and friends. It gives you an extra boost during the day.
It is amazing how many people you know are impacted from cancer. I just found out that another person that Danny and I know from Microsoft, Paul Sinclair, has lymphoma (similar disease as mine – another cancer of the lymphatic system). I have put a link in the “Other Cancer Blogs”.
Day -1 Complete (Alleluia)
2/8/2007 1:17 PM
I have finished my last dose of High Dose Chemo this morning (Alleluia!!!).
The chemo drug today was Melphalan. This drug is taken while you eat ice (15 minutes before, during, and 30 minutes after). The ice is to lower the temperature of the mouth and throat to restrict blood flow to these areas. This minimizes the amount of chemo that circulates to your mouth and throat, which reduces the chance of mucositis and esophagitis (fancy words for mouth and throat soars). This was quite a chilling experience… I was all bundled up in blankets, coat, and had my laptop in my lap to keep me warm.
It has been great having Linda here as my High Dose Chemo companion. You could not ask for anything more perfect… she is a nurse and a beautiful sight to see each day. I am in good hands – she is has been a great person to help me set and meet goals. She has kept my Communications Board updated daily. The doctor gets a real kick out of this and makes a comment/joke each time he does his rounds.
Linda has also gone out of here comfort zone and gave whole blood for me. She is just on the border of being to light to give blood and she bruises very easily. But, she gave blood yesterday, which gives me credits toward my future transfusions. These credits give me preference on single donor blood and platelets. If you are in the Houston area and want to donate whole blood or platelets in my name, you can go to MD Anderson (see link for locations) and tell them that you are donating for Thomas Ryan (patient ID 0697803).
Oh boy, I am so relieved that I have made it to this point. God has given me ample strength and protection to this point and I am very thankful. I appreciate all the prayers and assistance from family and friends. This has made all the difference in the world and revealed to us the true grace of God.
Tomorrow is my new birthday (I get my cells back). Without these cells I would not survive and so the term used for this part of the process is “stem cell rescue” (infusing cells that will bring back the source of my red cells, white cells, and platelets… crazy stuff). My counts have been slowly dropping and I am expected to bottom out on my counts within 2 weeks. I am hoping that I will rebound sooner than later (so I can get over to the apartment and get into a more normal setting). Until my ANC (absolute neutrophil count) is over 1.0, I will not be allowed to check out of the hospital.
I will post some pictures tomorrow of my Birthday Party!
Day 0 – You say it’s your birthday…
2/9/2007 12:14 PM
Today was the big day! I got my stems cells back and I am starting a new life…
The infusion process went well (only had about 5 minute period where I got very flushed and had some breathing problems, but these were from the premeds – Benadryl and Prednisone). When getting your stems cells back they check and recheck that you are the correct patient. This is very, very critical (Ryan Thomas’ stem cells will not fair too well in Thomas Ryan’s body – and there was a Ryan Thomas in my room about a week back). The stem cell infusion is orchestrated by many people (starting at the lab all the way to a dedicated infusion nurse that stays throughout the entire infusion).
Linda brought in some birthday surprises to celebrate the occasion (I only reminded her that once a day for the past week that I was having a new birthday J).
I am starting to get back to my normal weight again. At the beginning of the week I was 205 and now I am at 190 (as of this morning). It is amazing what a chemo diet will do for you…
They expect that I will be in the hospital for another 2 weeks. During this time I will go very low in blood counts and will be susceptible to infections and will be closely monitored for internal bleeding and fevers (which will require testing to determine what is creating the fever… if this happens, it typically extends the stay… so I am praying for no fevers and will do all my required exercise to stay healthy).
Another milestone is completed; next major milestone is going to the apartment from the hospital.
Day +2
2/11/2007 4:11 PM
Well, I am finally on the plus side. The expected discharge date is on Day +14 (as long as my sister does not give me the flu – inside joke…).
Dea, my sister, was able to see me on the night of my birthday (and brought some gifts… I kind of like this second birthday thing). Linda flew back to Atlanta yesterday and is happy to be back home for a week (especially to catch up on my insurance bills J). Dea is enjoying the apartment and the time to read.
I have experienced some new side effects. The mouth sores are starting, but tolerable. Also, last night I broke down and took my first pain pill for esophagitis. It kindly woke me up at 12:00am and I tried to ignore it until 1:30pm. After getting a pain pill, I finally got back to sleep at 4am. This pain came back again at 11am today and the doctor said it will probably get worse until my white counts start rebounding – 7-10 days (note that white cells help heal wounds and my count is 0.9 k/ul and should be between 4.0-11.0). I continue to do the mouth care to minimize this side effect. I can still swallow at this point and doing my best to keep it that way. It is not uncommon to get to a point that you are not able to swallow and you are just on IV fluids (hopefully I do not get to that point… but I wouldn’t mind being a lean, mean 170 fighting machine J).
The walks are getting tougher. My blood counts are dropping quickly and my stamina is not as good as it was during chemo. Dea is making sure I get all 3 walks in by end of day. To help the blood counts, they started neupogen shots yesterday. I will probably get this once a day until the white counts come back up. The hemoglobin is still above 8 g/dl and platelets are still above 20 k/ul, so I will not need a transfusion today.
BTW, yesterday we had a visit from volunteer services. One of the guys was a NASA rocket scientist that is a 7 year brain cancer survivor from MD Anderson and is still working for NASA today (he brought pictures for my family on the next generation shuttle system). He also was looking for someone to take his American Flag Do-rag. Dea could not wait to get a picture with me in the do-rag.
Day +3
2/12/2007 7:12 PM
Counts continue to fall as expected and strength appears to correlate with counts. Dea donated blood today. She donated quickly and ended up fainting on way back to the room (a doctor brought her back to the clinic to juice up and rest). She made it safely back to the room in time to watch 24 J.
Day +6
2/15/2007 8:11 AM
I am still alive…
Last few days have been some of the tougher days. The last 2 days, I have almost slept/napped around the clock (except for Dea’s story telling hour). I have never experience such a low level of energy. Even with that low energy level, Dea has been good about keeping up with my walks and incentive spirometer.
My low energy level has been due to my rapidly dropping counts and fevers. Tuesday night was the beginning of my fever (100.9). If you go above 100.4, they start you on IV antibiotics for up to 2 weeks. Last night the fever went as high as 100.6. Fevers are not uncommon after a transplant. With no immune system, even your own flora can get out of check and cause fevers. They take fevers seriously because your body cannot fight infections with no white blood cell count (which is where I am now).
My platelets and hemoglobin have both dropped below the threshold levels and I am getting platelets as I am typing this blog and later this morning I will get a whole blood transfusion.
Based on today’s counts, I am not at rock bottom yet. Most likely it will be another 2-4 days before I start seeing the results of my new stem cells grafting.
Day +8
2/17/2007 7:27 AM
I received some encouraging news this morning. My blood counts are showing signs of stem cell engraphment. The key indication for engraphment will show up in the “White Count”. They are looking for it to go above 1-2 and stay consistently above that range. This morning my white cell count was 0.6, which is a very good sign that my new stem cells are doing their job!
Yesterday was a good day. My fevers have gone (last night it did not go above 98.1 the night before it did not go above 99.7). I had a good level of energy and got back to my 20-25 minute walks (vs. earlier in the week I went down to 15 minute walks do to being heavily winded after 10 minutes). Dea is getting stir crazy, but hanging in there (you know she is getting a little bored when she starts using the hospital supplies to create art). She even forced me to wear her artwork J
Last night Pat Tracey dropped by my room to let me know she arrived at the hospital. Pat is a new friend that I have met in Houston (we got to know each other when we were at a grocery store and we both had our masks on… and shared stories of how we deal with side effects and make the best of our experience). Pat is going through an allogenic stem cell transplant for NHL and due to her age she is at high risk, but because of her energy and attitude, she is well prepared for this experience. She also received a bone marrow donation from a 22 year old (which is very encouraging – for someone to donate at that young of an age and to get stem cells from bone marrow vs. peripheral blood).
This week I attended the discharge class on Tuesday (the class on Thursday received “Don’t EVER give up!” bracelets – another friend of mine found out that I did not get a bracelet and she got the nurse to get one for me and my sister – I even have new friends here in Houston looking out for me J). Hopefully, sometime next week (when Linda and Alex are in town) I will be able to relocate to the apartment. I am starting to get anxious to break free of my room/floor. I have not left the floor since 2/2 and looking forward to new scenery. Getting my blood counts this morning is giving hope to a discharge next week.
Day +9
2/18/2007 7:52 AM
The good news keeps on rollin’….
Drum roll please…. Tommy’s counts this morning are…. 2.8!!!
This is huge news as the nurse this morning said that I will probably get discharged on Tuesday (because Monday is Presidents Day and they do not typically discharge on a weekend or holiday). I have not seen the doctor yet this morning, so nothing is official yet.
Because my counts started moving up yesterday, my doctor gave me permission to leave the floor yesterday to take a walk on another floor of the hospital. This was quite a gift. The freedom to leave the floor was so exhilarating. It was a treat to have new scenery and to have wide open spaces to walk (i.e. not having to dodge doctors, room service carts, other walkers at different paces… it is tough to be a fast walker on a stem cell transplant floor J). Dea and I went to the skywalk and took a minute to sit and bask in the sun before taking a very long walk (I can’t wait to take the next step and get a breath of fresh Texan air and feel the direct rays of the sun).
Today, Linda and Alex are coming up to relieve Dea. Dea has been an awesome companion. She has kept me going through the toughest part of my stay in the hospital. I am so glad she was here to keep my spirits high with her great sense of humor and her kind acts. I was able to experience her reading her one act play in person, which was a special treat. She was very careful to make sure I stayed healthy through the most dangerous part of my recovery. Thanks for everything Dea – I love you! (you are now my favorite sister J)
I am looking forward to seeing Linda again today and to spend some quality time with her and Alex this coming week…
Day +10
2/19/2007 4:43 PM
Today, I was discharged at 2pm from the hospital. Freedom! (Freedom from… collecting my inputs and outputs, a IV pole, from vital signs every 4 hours, being restricted to G11 floor). …”I’m free to do as I want any ole time“… (I have been whistling this ever since I was discharged)… although, Linda dampens this by enforcing my incentive spirometer (which I was not able to leave at the hospital)
Don’t get me wrong, the staff and facilities are excellent at MD Anderson. It is just having the same routine for 18 days can be a challenge. I am so fortunate to be able to leave the 10th day after transplant (typically it is at 14 days).
I was happy to leave the hospital, but Alex was a little sad to leave. He was starting to enjoy the hospital food (which is actually excellent for hospital food). Alex was very surprised to see the effects of the chemo on my teeth. My dentist is not going to be very happy about this…
It is great to finally be at the apartment in my special request recliner. Alex is out playing a few holes of golf. Across the street is a small public course and juniors play 18 for $6 (he is in heaven).
I have updated my counts on the spreadsheet. Note that I have put the normal range for white, red, and platelets. I am in the normal range for white and have a ways to go to get back to normal for red and platelets. Note that even though the whites are in range, they are still immature for fighting infection and it will be 1-2 years before my immune system will be back to a normal adult.
Day +12
2/21/2007 6:22 AM
Yesterday, I had a “Fast Track” visit to the “Stem Cell Transplantation & Cellular Therapy” Clinic. Fast Tracks are lab draws to check on blood composition. After the lab draw, I return in 2 hours to talk to an APN (Advance Practice Nurse). One of my favorite APNs saw me yesterday (Jill – she is a twin and her brother is Jack; she always keeps things light, but very informative). She was very surprised to see me so soon. The typical stay in the hospital for an AutoSCT is 17+ days after transplant (I was 10 days after transplant – always trying to exceed expectations J). The blood counts look good (red and platelets continue to climb and white count was down, but most likely due to stopping my neupogen). My counts are not updated on the site (having some technical difficulty).
Alex was adamant about having lunch at the hospital cafeteria. He loves the cafeteria and would like to have lunch everyday there. Luckily, my APN scheduled the removal of my CVC (she does not foresee me needing it – hurray; and it is a source of infection). So we had that removed and then had lunch. It feels great to have that removed and it was very nice to sleep without my breast tassels J.
The APN today mentioned that my taste buds will return in 4-6 weeks. The lack of taste and the rawness of my stomach are effecting my appetite. My stomach is still not back to normal… I am rarely hungry and need to eat to stay nourished (not eating due to being hungry), which is very odd to me. I do have some taste sensations, but food is very bland and textures are more detectable than the flavor is. They say that this is the period of time that most people lose weight. We will see if it has that effect on me (I doubt it).
Another thing that the APN talked about yesterday is about my immune system. Pluripotent Stems cells (the stem cells that I collected and had reinfused after wiping my system of all stem cells with high dose chemo) form two lineages (myeloid and lymphoid lineages). The myeloid lineage produces the counts that I have been tracking in the Excel charts (white blood cell, hemoglobin, and platelets). This lineage is the first to recover from the new stem cells (and will probably be in normal ranges by the time I leave Houston). The lymphoid lineage is the source of B Cell and T Cells. This lineage takes 6 months to replace and I will have certain restrictions for the next 6 months to protect me from viruses that these cells naturally fight off. In general, it will take 1-2 years to have my entire immune system back to my original strength.
Well, things will start to get boring on the blog. I will continue to chronicle the visits of my caregivers and give occasional updates (pictures, blood counts, and hopefully no medical surprises).
Day +17
2/26/2007 6:07 PM
Life is good in Houston. I was able to spend some time with Danny this weekend… of course we got some quality time on our computers and walks. The weather has been excellent for walks outdoors.
Linda and Alex are back at home and the kids are back in school today from their week winter break. Mom is my caregiver for this week. She is doing a great job… cooking some great meals and keeping my honest with my spirometer.
I had a checkup this morning. The counts are looking good (I have updated the charts if you want to see the details). Platelets took a huge jump and red continues to climb. The white cells dropped, but the APN was not concerned. I am having pain my right neck (where the cancer was found), but the nodes are not swollen. The APN thinks it could be scar tissue. Next week I am getting my re-baseline of scans. If there are any issues, it should show up in the PET Scan.
My next appointment is Friday for another check of blood counts.
Day +21
3/2/2007 3:24 PM
I had another Fast Track Lab drawn today. They are happy with the blood counts. The white cells are not dropping; the hemoglobin came up; and the platelets continue to rapidly climb (actually above normal now) – see chart for further details.
My APN, Jill, said that I am on track to leave next weekend. Next week is my re-baseline (CAT Scans, PET Scans, and Chest X-rays) and on Friday I will see my physician Dr. Shpall. Jill gave me a preview of what to expect when going home. She would like me to start back at work part time (I neglected to tell her that I am already working 8 hours a day; 5 days a weekJ). I should be able to have fresh fruits and vegetables starting next Friday (but to start slowly and start with fruits that are peelable –i.e. apples, bananas). I will need to avoid anyone that is sick for at least the next 6 months (so I cannot have any visitors at the house that are sick, have runny noses, or had any live vaccines within 6 weeks). I am not allowed to work with dirt (i.e. mulching, planting, and gardening)… the funguses in soils are very dangerous for the next 6 months (my immune system cannot fight funguses – i.e. not enough T-cells). There are several other gotchas and warnings, but I will not bore you or get too personal – if you know what I mean, wink wink… I am keeping this blog rated G).
The weather continues to be excellent. Not outside that much (I have to limit my sun exposure and need to wear 30 block to go outside), but I get in a 45-60 minute brisk walks each day.
I am looking forward to my time with Bobby next week. We plan to sunbath by the beach, hop bars, and eat at a buffet a day (I can write this because Linda does not read my blogs…).
Home bound…
3/9/2007 6:16 PM
Well the day is finally come… I have been given clearance to return home. As I write this, Bobby and I are driving back to Atlanta. The scans came back and the PET is negative. The CAT scan shows enlarged nodes on each side of the neck, but they have shrunk since the CAT scan in January. They are fine with the nodes and said that it could be 3-6 months before the nodes return to normal size.
The doctor has loosened up on some of the dietary restrictions, but I need to apply common sense (e.g. not eating lettuce at restaurants, but eating lettuce at home where I can thoroughly clean the lettuce). I know we will struggle with the “common” sense and Linda and I will have “uncommon” sense, but I will do my best to be careful and stay sane in the process…
Bobby gave mom a run for her money with cooking at the apartment. Bobby cooked up a storm (eggs and hash browns, steak and chicken on the grill, and many other tasty treats). It took a while for Bobby to adjust to playing cribbage each night (“old folk stuff”), but the Miller Lites eased the pain.
I am looking forward to getting back to work to see the team and especially looking forward to seeing the family. I have been gone for about 2 ½ months and need some time with the kids.
Day +45
3/24/2007 4:40 AM
As you can tell, by the lack of posts on the blog, I am getting back into the swing of things. I have been working full days for the most part since I have arrived back home. Last weekend, Linda and I escaped to the mountains of North Georgia. It was a very cold weekend, but nice to get into a relaxed atmosphere with Linda (away from work and home duties). With the kids, I have decided to take them out over the next 3 weeks on Wednesdays after work. I have already taken out Austin and Madeline and will be taking out Alex next week.
I have been feeling quite well since my return from Houston. The only slight problem I had was a stomach virus (I think it was a reaction to the heavy amount food I had the day before and combination of long day at work with taking Madeline out afterwards for her night out)…. Either way, the GI track takes 6-8 weeks to recover from the chemo, so this is not unexpected.
It has been a mixed blessing to get back to work. Many things to work on and doing my best to attack what I can. With exercise, I had my first 1 mile run this week (or more like walk/run) and I have a lot of improvement to make with my cardio and general fitness. I have really taken a significant setback in physical fitness, but it is hard to know what is due to my stem cell replacement and what is due to lack of exercise. The walks have been good, but looking to get back to better workouts.
Yesterday, I had a visit with my local oncologist and I got a big thumbs up. The blood work was very positive (now my WBC is in the normal range) – I have updated the charts… some very nice trends. I will go back every two weeks for a while and at 3 months I will go back to Houston for scans and a visit to the doctor.
It seems that my treatment was several months ago, even though I have just been home 2 weeks. I am so glad to be home and getting back to my family and work.
Good luck Marathon Runners/Walkers!
3/24/2007 5:18 AM
This Sunday is a big day for the TNT (Team In Training) runners/walkers. The following are teams that are participating and have raised funds for tomorrow’s race (Georgia Marathon) are:
- Danny Ryan and Amy Ryan (brother and sister-in-law) – running the marathon
- Bobby Ryan (brother) – running the marathon
- Frank Ryan (dad) – walking the marathon
- Llen Ryan (mom) – walking the half marathon
- Joanne Melear (Amy’s Mom and my adopted mom :>) – walking the half marathon
- Mark Harding (family friend) – walking the half marathon
These teams have raised almost $20,000 for the Leukemia & Lymphoma Society! I am very proud of them all. They have done an excellent job at meeting their fund raising goals and have put in a lot of hard work and sacrifice to be ready for this race. It is tough not to be with them tomorrow (doctor’s not thrilled about me being in crowds), but I will be with them in spirit and will be monitoring the race.
Good luck runners and walkers!
Georgia Marathon was a Success!
4/1/2007 8:19 AM
All Marathon and Half Marathon runners were very successful in their runs last Sunday. Everyone finished the race and did not have any major complications. As I start back into exercise (can not even run a mile yet without walking), I am amazed in what everyone has accomplished!
It was difficult not to be there in person to cheer them on, but I was able to talk to just about everyone as they hit significant milestones during the race. The email alerts were great to see and helped me feel part of the race.
All the runners will be over our house for an Easter celebration next Sunday. I will put some pictures of the runners up on the website after the gathering.Having Easter at our house will be very special and is an appropriate celebration of the Paschal Mystery. There has been plenty suffering by all (Marathon Trainers, Family and Friends dealing with the realities of Cancer, and my own experiences – not just treatment but separation from family and friends). But the beauty of it all is that we have all died to something to be born into a richer life (that either being better fitness, new friends, closer relationships, or clean of cancer). There have been many blessings over the past several months and we will be celebrating that this Easter.
Day +65 (Getting Back To Normal… Whatever Normal Is)
4/14/2007 9:31 AM
It seems as though it has been such a long time ago that I went through my treatment, but it only has been a little over a months since my return from Houston. I had another doctor’s appointment with my local oncologist and things are still looking good. My only issues are elevated blood pressure and gained 12 pounds in 3 weeks.
My work schedule is up to full days of work (and then some… not sure if I ever had the half days that the doctor prescribed J). Last weekend we had most of the TNT Marathon Runners over to the house for Easter Lunch. It was great to have the whole family together.
My personal appearance is starting to transform back to where I was before starting treatment. Just 2 weeks ago, I had no eyelashes and 3-4 eyebrow hairs and now my eyelashes are about half their normal length and I am getting my “unibrow” back. I have stubble across 80 percent of the body now and have to start pulling out the razor to shave each morning – that is my face (the shaving vacation is gone). I wish that I could selectively determine what hair makes its return… The hair on my noggin is coming back and the chemo did not do me any favors with the distribution of my hair on my head. I might be back to a shaved head if the concentration of follicles does not improve. The hair is soft (more like baby hair than what it was like before, but that should change – I went through the same thing with facial hair).
I am now trying to get back to exercise. I am supposed to stay out of public gyms for the next 1-2 years, so we cancelled the Y membership. I am taking walks with Linda 3 times a week and occasionally give running a try, but extremely out of shape for running (cannot even run a mile – not quite in the same shape as the marathon runners are). I miss starting the day off at the YMCA on the elliptical machine, but I will have to form some new exercise habits.
Before I sign off, I would like to let you know that a friend from college has recently found out that her husband has Hodgkin’s. I know that I have received many prayers from people that have been reading my blog. If you could, please pray for Tom Schuerman. Pray that he has strength during his treatment and that his two children and wife, Becky, have strength and trust in God to bring blessings through this experience. Tom is in my “Blogsroll” section of my blog if you would like to read about his battle with cancer.
Day +93
5/12/2007 8:10 AM
I had a good visit with my local Oncologist on Tuesday. I have updated my blood counts in the chart. The white blood count has dropped, but the doctor was not concerned. I will eventually get there…
I am scheduled for my next visit to be in Houston (June 7, 8). While I am there, it looks as though I will be getting CT scans (oohhh the joy of barium enemas), Chest X-ray, Bone Marrow Aspiration (another hole in my hip, no biggie), and blood work. While I am in Houston, I will attend Survivor’s Day. I am looking forward to seeing my friends that I meet during treatment.
I will also be going with the entire family. This will allow Austin and Madeline to see where Daddy had his vacation.
Reflection, Blessings, and Appreciation
5/12/2007 8:29 AM
These past several months (especially time in Houston) has been quite a blessing. Going through an aggressive cancer treatment has really connected me to my humanity. Being in touch with your humanity is an experience that brings us closer to who we are, our purpose, and the importance of relationships. My time in Houston was an incredible gift of spending time with my family as individuals. Not only did they take time out of their busy life to care for me, but I felt that they did this because they truly loved me as their son, brother, husband, or father. This time was an opportunity to talk and just be – a rare activity for me. This has been one of the biggest gifts in life that could never be purchased (as MasterCard would say… “priceless”). I have very fond memories of prayers in the morning with Mom; very long walks and dinners at Prego with Dad; cribbage and beers (no I was not drinking) with Bobby; chilling in the apartment with Danny; struggling to get the energy to get in a walk at the hospital with Dea’s support and with zero energy, enjoy listing to Dea’s play being read during “story time”; Alex’s craving for the “awesome” hospital food; and Linda’s incredible support over the several weeks that she spent with me in the hospital and the apartment. What an amazing blessing to have a family that you love and who loves you.
I also am amazed in the support and love received from people that have supported me (and still are) with cards, calls, emails, gifts, and especially prayers. I was pleasantly surprised with how much people care and who did come out of the woodworks to show their concern and support. Of course there are some people that I did not hear from directly and most likely were supporting me through their prayers and well wishes in their hearts. I know it is awkward to reconnect or send a message when someone you know is going through something difficult and you do not know what to say. What I have learned from this experience is importance of relationships and to be connected. For example, I would struggle with taking time out of my day for lunches and meeting to connect with people (vs. getting more work done). I saw this activity as only a necessity of being a business owner. But now, I thoroughly enjoy taking time out of my busy day to meet with others and to have a conversation that is more than doing business. This perspective has given my interaction at work and home another dimension that has strengthened my purpose in life. I do not think this is a new lesson (I have always been a person that cares about others and not just work), but it has been a wakeup call.
At Houston, not only did I get a chance to reconnect with my family, but I got a chance to connect with others that have the humbling and challenging experience of fighting and/or dealing with the threat of cancer. I have met others this year that have more difficult treatments and have a worse prognosis than my situation. Each person has managed this experience differently and I gravitated to those that face this with courage and strength. I have been in touch with some of my friends from Houston and look forward to seeing some of them at Survivor’s Day in Houston. This event is for Stem Cell Transplant Survivors on June 9th at MD Anderson.
Outside of family, friends, and new friends from MD Anderson, I have also connected with others through this blog. For example, just this week I received an email from someone in Canada that was inspired by my story on this blog and it appeared to give her more peace with dealing with her 28 year old son’s experience with the same diagnosis as me. I have also received several emails from friends of friends that have given me their support and prayers. It is awesome to see how a support network grows through relationships.
So as you can see, this has been a true blessing. I hope to keep true to the lessons I have learned and continue to unveil what is my purpose. I see this post as a mini reflection (a short story and not a novel) of this experience and a thank you note to all of you that are with me on this journey. I am still getting requests to keep this blog going, so I will continue to post (most likely once a month). Next month is a critical visit for me in Houston and I will be sure to give an update when I return.
3 Month Checkup at MDACC
6/10/2007 2:11 PM
Today, I am 121 days out from the transplant and I spent this past Wednesday through Saturday at MD Anderson for my first follow-up visit since leaving MDACC. For this trip, I promised to bring out my sister Deanna (you probably remember her from my days in the hospital… the one who drew pictures on my masks) and the twins (who have not seen Houston before). This trip was packed with scans and doctor visits along with getting in sometime around the neighboring areas of the hospital.
We started the trip on Tuesday afternoon (6/5/2007) and we stopped at a hotel in Biloxi, MS (one of the few places on the beach that survived Katrina… it was amazing how thorough Katrina wiped out that coastline in Biloxi). The kids (that includes Deanna) got to walk the beach Wednesday morning and spend time in the pool before getting back on the road. For the remainder on the day, we traveled to Houston. The next day, Thursday, I spent the majority of the day getting scans and blood work. The twins got the grand tour of MD Anderson and were amazed with what they saw (they also agreed with Alex on the quality of the cafeteria food – Austin, like Alex was planning for his next meal at the cafeteria before we finished our meal). They got to start their day with a breakfast croissant at the “Deli” near the rotary House (a favorite of mine) and we finished the day at Goode Company Barbeque (a standard for all my guests in Houston J – and yes Alex, I am bring home a pecan pie from Goode Company).
On Friday, I got to sneak in a good bit of work while the kids slept in. My appointment to see my doctor, Dr. Shpall, was at 11:30. We went early, but as luck would have it, Dr. Shpall was running late and so the kids got to experience the hurry up and wait of being at a busy place like MDACC. The visit with Dr. Shpall was uneventful (which is what you want to have…). The only information that was available was the blood work (counts are updated on the chart). My scans and bone marrow biopsy will not be available until Monday. My PA will email results when they come in. I am experiencing constant pain in my lower left hip, so I had them take the biopsy from the left side. I am anxious to see the results of the biopsy. I am also having problems with pain in my shoulder blades. I cannot stretch my arms over my head without having intense pain (sitting still, I do not feel anything). Dr. Spall thinks this could be arthritis (which is possible post stem cell transplant). She said that SCT speeds up the aging process. She will be looking at the scans for any issues. She said that if it is arthritis that she recommends Glucosamine.
After my doctor visit, I was able to bring the gang to the Butterfly Museum and an IMAX (Deep Sea 3D – that was a fun one) at the Museum of Natural History. We also spent some time chilling (actually frying – glad that my treatments were not in the summer) in Hermann Park’s Japanese Garden. We finished the day by going back to the Rotary House for a Presentation from the Houston Salsa Dancers (click on the link to get to a YouTube of them dancing at the Rotary House… this was not the day we saw them, but it was the same members of the group dancing in the same location of the hotel). They started the night with belly dancers (good Linda was not there J) and at the end we (Dea, Madeline, Austin, and I) got cha cha cha lessons.
On Saturday, I got to sneak in some more work (I am such an addict). We had a late breakfast at the hotel and made a new friend at the hotel restaurant, Mary Ann, who is a leukemia survivor (had an allogenic transplant about 3 years ago – she was there for survivor’s day). Later that morning was BMT Survivors Day (an annual celebration for Stem Cell Transplant Survivors). The theme of the event was carnival. They had kettle corn, hot dogs, nachos, cotton candy, candy apples, etc (all the healthy things needed for building your defenses against cancer). All kidding aside, this was a very well done event. As with events like this (where you do not know many people), there was a scavenger hunt to meet new people. I am usually not to keen on these things, but really felt it was an effective ice breaker to meet some very interesting and brave people. The people I met ranged from a 9 year old transplant survivor that had a stem cell transplant at 15 months of age to a person that was the 2nd transplant patient at MDACC.
The kids enjoyed the event with all the games that were setup to win various prizes… they also enjoyed the ice cream we got at the end. During the event, I was looking for the friends that I met while I was at MDACC for my transplant. In particular, I was looking for Pat, Jim, and Michael. It wasn’t until close to the end of the event before I found Pat (picture of Pat and I at the event). Actually, it was her relative (Mary Ann – the person I met earlier in the day) was the one that ran me down and brought me to Pat before she left the event. She was glad to see me and I was relieved to see her. She is still struggling with shingles, but she says that they are starting to get better and that she expects to go home in a few weeks. I was so glad to see her… I did not want to make this trip without seeing her smile (as you can see in her picture, so has a great smile). I did not see Jim or Michael (and I corresponded with Jim’s dad less than a month ago and they were planning to be at the event).
The last that I heard from Robert (Jim’s dad) was that Jim’s leukemia had come back. I was not aware of the seriousness of this coming back and was praying that Jim would be able to fight this return of the cancer. Because I did not see Jim at Survivor’s Day, I went up to the 11th floor of the hospital and walked the halls to check the patient boards for Jim’s name. I could not find his name, so I ended calling Robert. Robert and his spouse were on their way back to his hometown (Lafayette, LA). Robert informed me that the leukemia had spread to the brain and that Jim was terminal. On Saturday morning, Jim was picked up by ambulance (the same company that Jim worked for back home) at MDACC and driven back to his hometown hospital. Needless to say, this was a very sobering and sad piece of news for me. I felt extremely helpless and was not sure what I could do.
Linda, my wife, suggested that I call Robert to see if I could visit Jim on way back home (since we pass the town of Lafayette). This call to Robert was difficult to me. I did not want to impose on Jim and his family during his last days with his family and friends. I ended up calling Robert and asked if Jim would like for me to visit on my way through town. Robert felt that Jim would appreciate this. Robert was acting on Jim’s behalf to make this decision (the leukemia has attacked the portion of Jim’s brain that affects speech… so Jim is not able to speak). Robert said that he occasionally will say a word or two. Jim said late last week the words “go home” (which was Jim’s wish to pass in his home town and not Houston).
It was very difficult to see Jim. He is a fighter, but you could see in his eyes that he is at peace with his condition. There are few words that came to mind when facing Jim in his terminal condition. All I could do is to go up to him and hold his hand and say God Bless. I will continue to pray for Jim to have a blessed life as he is visited by family and friends. Jim and Robert are and will continue to be a blessing in my life.
Results on CT Scan and Bone Marrow Biopsy
6/13/2007 6:00 PM
Good news, my results came back on the CT Scan and the Bone Marrow Aspiration and Biopsy and they found no evidence of cancer. My left buttock pain is still going strong (I was tempted to but a Wikipedia link to buttock, but I am keeping this to G rated content). I am taking anti-inflammatories to see if my pain is due to inflammation problems. If the pain is still there after two weeks, I might be going back to MDACC for a PET Scan. I have heard from other cancer survivors that they have received bone pain after treatment and it has been a few years out from treatment. I am pretty sure that the shoulder pain is arthritis (now I can empathize with my wife’s mother J).
Please keep Jim in your prayers. Next week we will be at the beach. Looking forward to a true vacation…
It Stinks Getting Old
7/22/2007 3:28 PM
Things have been going very well since treatment. I have not had any major illnesses since my return from Houston. Only issues are with my right shoulder and left hip (pain from the area that the cancer metastasized). The pain in the right shoulder is constant and I am not able to use it for throwing or catching a ball without very intense pain. They have done some follow up CT bone scans to see if I have any spinal joint issues, but they could not find anything. They wanted to perform a MRI, but I have metal clips in my abdomen from my staging laparotomy that was 13 years ago (so that would be like putting tin foil in a microwave – if you know what I mean). When I get my PET scan in September, I will be more at peace with this pain. For now, if it does not get worse, they are fine with me waiting until my next appointment to do further diagnosis.
Linda and I are walking regularly and enjoying the time together on walks. We have been also slowly changing to diet very high in vegetable content. The kids are more disciplined with this than I am, but I am getting better. Most of the dietary changes are coming from a book sent to me while I was going through my treatments. The book is called The pH Miracle. It is a controversial book, but we are taking a common sense approach to adopting practices from the material (for example – our salad dressing is a squeezed lemon, olive oil, and cracked pepper… this is not a radical, but common sense approach to eating healthier… vs. using a salad dressing with a mile long list of preservatives, dyes, sugars, etc.).
BTW, I recently received an email from another cancer survivor that is looking to raise funds for cancer. I would like to share with you his email to see if you would like to support Gavin (he is on my “Other Cancer Blogs” list and we are donating to this cause):
(From Gavin’s Email)
Hi there!
I know some people are aware of my recent medical history, while for others this might be some new news. After reading this, please consider donating or at a minimum pass this along to everyone you know! If you are not interested in helping or passing this on, please accept my apologies for the spam and delete.
—
My name is Gavin Sharpe and this year I celebrated birthday number 35! I have a great wife and 3 wonderful children 14, 11 & 8 living in sunny Charlotte, NC.
This past December (2006) I was diagnosed with Stage 4 cancer (undetermined origin). I am currently taking a few months break from treatments in order to reduce the toxicity from chemotherapy. I am not cured, nor am I in remission**, BUT recently I have been thinking about how I can use my condition to help others. Also, I know many of you have been touched by cancer in one way or another so I felt this would be positive for you also….
We recently discovered the 24 hours of Booty Bike-a-thon that raises funds for Cancer research. At the moment, I can’t think of a better, more positive use of my condition than helping to raise money for cancer research!! Neither my wife or I are hard-core bikers, however we BOTH are riding with our friends in order to show support for others with cancer and these great charity organizations working towards finding a cure for cancer!
I am raising money for this very important cause and I’m asking you to help by making a contribution, most people give around $50, but please give what you can! Please use the link in this email to donate online quickly & securely. The event is coming up shortly (Next week 7/27)so if you can give, please do so soon! We thank you in advance for your support, and really appreciate your generosity!! Also, feel free to respond to me if you’d like to ride or help in other ways…
For more information or to donate : http://www.active.com/donate/Booty2007/GavinSharpe
Please forward this email to as many people as you can to encourage them to donate as well!
Sincerely,
Gavin Sharpe ** For more history or to continue following my progress, check out http://gavinsharpe.blogspot.com
Blog Plans
8/18/2007 4:39 PM
My plans for this blog are to start integrating other topics on this blog beyond my cancer experience. I am ready to move on from this topic and get into other topics. At about the time of my 1 year birthday (2/9/2008), I foresee moving this content to another location (or just consolidate the categories on my cancer experience into one Category like “Cancer – Round Two”). I will start integrating other “Categories” that I am passionate about in the near future (e.g. Software Development Process, Family, and Dynamics of Software Consulting are a few that might show up).
I am aware that several people that I know (and don’t know… the power of the internet) find value in what I have put in the blog. I want people to have this as a resource for strength and insight to coping and fighting cancer, so no matter what I will make sure this will be available on the web.
Quick Update on my recovery… My strength, energy, and outlook on life are awesome! Next month is my 6 month checkup where I get my PET scan. Coming clean (i.e. cancer free) on this visit will be a huge milestone. The bone pain in my hip (constant mild ache that is tolerable) and the shoulder pain (which is getting worse… can be at times extremely painful, but it appears to be not cancer related… possibly calcium deposits in my shoulder as a result of the high dose chemo). I am seeing an orthopedic doctor that specializes in shoulders on Monday and hope to get this shoulder thing diagnosed and fixed.
Arrived in Houston for 6 month checkup
9/20/2007 1:30 PM
(Quick update… I am sneaking in a blog post from the hotel computer…. Linda thinks that I am getting some hot tea for her)
Linda and I have safely arrived in Houston for my 6 month checkup. I have gone through all my tests (PET, chest xray, blood work) and only have a CT scan left (more of the barium treatment from both ends).
The weather is warm in Houston and we are enjoying some reading time out on the lounge chairs by the hotel. Of course, I am getting plenty of email correspondence on my Windows Mobile phone…
Linda and I are taking pictures and will upload them most likely on Sunday. I will not have any results by the time I visit my physician on Friday (tomorrow). As soon as I get the full report, I will post up to the blog.
Thanks for all the prayers. This visit will be a big milestone. If the PET is clean, that will be some awesome news. The bone pain in the hip is still the same, so it will be great to see that this is only nerve damage and not any cancerous activity.
Prayers answered for 6 Month Checkup
9/24/2007 9:10 PM
Last night Linda and I returned from my 6 month checkup (more like 7 month checkup). I crammed in all the tests in on Thursday and had my physician visit on Friday.
Friday my physician gave me some excellent news. The PET Scan was clean as a whistle and the blood work was normal.
Linda and I used our weekend gift certificate to the hotel (2 nights and breakfast) and stay in Houston for the weekend. On Thursday night, we made a trip to Goode Company BBQ (also got a pecan pie for Alex). On Friday evening we went to the Fine Arts Museum and Hungry’s. And on Saturday, we went to Kemah for the day (a boardwalk on the Galveston Bay).
Pictures for the trip are posted up on Flickr.
No news is good news
10/28/2007 1:10 PM
Recovery since treatment for the most part has been “boring”. I always brag to my physician that I do my best to be her “most boring patient” (ok, I know a few people that would play off of that statement well). I could easily complain about my ailments, but nothing life threatening J.
I continue to get emails from others battling cancer. Recently, I received an email from Steve Coffman about his reoccurrence of Hodgkin’s Lymphoma and how my blog helped him and his wife cope with their situation and prepare for his upcoming treatment. He mentioned that the Archive (Calendar) (no longer available, was on the SharePoint blog) was useful in preparing for his treatment. Since our exchange of emails, he has decided to start his own blog and is already being blessed by the contacts he is making with long lost friends. Apparently, having this blog of my cancer experience has not lost its value after finishing and recovering with treatment. I will have to make this available in some form when I move onto other topics for my blog.
Dr. Younes in recent MD Anderson publication
11/17/2007 2:11 PM
My Lymphoma Oncologist from MD Anderson, Dr. Anas Younes, was in the last publication of Conquest Magazine (http://www.mdanderson.org/publications/conquest/). It has a good article on the progress made for Hodgkin’s treatments. Looks like allogeneic stem cell transplant is the next step if I would have another relapse.
I was checking in with a friend, Steve Coffman, and he is looking pretty sharp with his new hair cut – http://www.caringbridge.org/visit/scoffman.
Suspicious Nodes Getting Scanned
12/3/2007 7:21 PM
I have some reservations making this post, but thought it would be best to post the news. I tend to internalize things and try to control a situation (but my faith challenges me to seek for help outside of my control). Over the next week, I could use some prayers to give me patience and peace that my life is in “good hands” with God.
Last Friday, November 30th, I had an appointment with my oncologist to check out some suspicious lymph nodes in my right neck. I was not sure if I was feeling something that was not there or not. The doctor did not see me, but the nurse did the assessment. The blood work was very positive and the nurse was not able to find any suspicious nodes.
I had the nurse check again, because I am feeling some crowding in the neck and can feel differences on one side vs. the other. After the nurse took another check, she said that she could feel the node(s) and it would be best to get a CAT scan. I have heard this before and it is scary to think that I could be back in the fight again.
The nurse seemed to indicate that this is just a precaution, but I have been through this before (let’s check just in case and it turns out that they find something) and do not have a great track record. If you know me, I will prepare for the worst and expect the best. My CAT scan is this Friday, November 7th, and it will probably be a few days to a week before getting results. I will update you all next week.
So you are saying there is a chance…
12/12/2007 6:09 AM
I have some awesome news to share… the CAT scan was negative! Thank God, because I made a promise to switch my blog over to other topics and to move away from cancer blogging (I hate to break promises).
Thanks for the prayers. I was little anxious and mentally this is a great relief.
I hope you all have a joyful Christmas Season. I wish that you have the opportunity to find Christ through the time you take to be with friends and family.
Successful One Year Checkup
3/2/2008 8:06 AM
Last Sunday, February 24, I flew back to Houston for my 1 year checkup post stem cell transplant. It seems so long ago. One year ago today, I was sitting in my houston apartment recovering from my stem cell transplant. What a journey it has been this last year… going into the unknown territory of getting a stem cell transplant and coming out a survivor. My faith in Christ has been strengthened and his love for me has overflowed through all the ways his has touched my life this year. He has touched me through prayer, community support (family, friends, faith groups, work associates, and clients), and through opening my eyes further to how he is at work in my life.
So, let’s get to the point… the results of my checkup. I had blood work, x-rays, and CAT scans. All the results have come back (except for one of the CAT scans) and I am “clean as a whistle”. I will have to check back in 6 months. Meanwhile, I need to go through and be reimmunized (I get all the shots that babies get) through 3 series of shots. My immune system is immature due to clearing the cells out of all my stem cells and starting over (with my cells as the seed to start the process of building up a new immune system).
This Houston trip had an extra bonus. I was able to stay with my high school youth group leaders (Molly and Kevin McCarthy) that just recently moved to the Houston area. It was great to hang out with them and catch up. They were very generous with opening up their home to me and taking me back and forth from the airport and clinic. Thanks Molly and Kevin!
Walking “Relay for Life” this Weekend
4/29/2008 2:33 PM
Our company, ThreeWill, has created a team for “Relay for Life” this year and plan to make this an annual fundraiser. This is a fundraiser for The American Cancer Society. Our family went last year and it was quite a moving experience to see Cancer Survivors and current Cancer Patients participating in this walk.
I participated last year in this event with my family and it was a fun family event that touched your soul. The principal’s daughter for the elementary school that my kids attended was walking this event with a respirator and she died weeks later. It is amazing to see the brave people that continue to have a sense of dignity as they go through a life threatening fight. You also saw what appeared to be many “normal” people walking in the “survivor’s walk” that you would not have guessed to be cancer survivors (cancer effects all walks of life… it knows no boundaries…).
If you want to sponsor Linda or I on this walk, you can go to one of the below links:
http://main.acsevents.org/goto/tommy.ryan
http://main.acsevents.org/goto/linda.ryan
We will have someone from ThreeWill walking from 7pm this Friday to 7am on Saturday. If you are local to Alpharetta, come on out to the track at Alpharetta High School.
Bob Buhay starts his journey
5/13/2008 4:35 PM
I would like to ask for you to say a prayer for a friend of mine that I have come to know through my second bout with cancer. Bob Buhay is at the beginning of his Stem Cell Transplant process with Salvage Chemo in Atlanta. He is just about going through the same routine I went through over a year back.
He is getting his salvage treatment in Atlanta with the same doctor I used in GA and will be going out to Houston for his Stem Cell Harvest and Transplant. He has been quite a trooper so far and showing that he is ready for the fight (see his blog post on 5/10/08… the attitude of “thank you sir may I have another” :))
If you would like to keep abreast of Bob’s progess, his blog is located here – http://www.caringbridge.org/visit/bobbuhay. Please add him to your prayer list for the next few months as he goes through his Stem Cell Transplant.
1.5 Year Checkup and MD Anderson Resources
9/1/2008 11:28 AM
I had my 1.5 year checkup this past week at MD Anderson. I arrived Wednesday morning and had an appointment with my Stem Cell Physician and Lymphoma Physician on Friday. I had full set of CTs, Chest XRay, and blood work. By the time I saw my physicians, they only had the blood work. Blood work was good and I should get my CT and XRay results on Tuesday.
While I was at MD Anderson, I picked up the Messenger (an internal magazine for employees of MD Anderson) and found a good article on web resources for MD Anderson employees and patients. Here are some of the resources they have for patients:
http://www.mdanderson.org/itunes/ – An ITunes Store Page that organizes all available video and audio podcasts from MD Anderson Cancer Center
http://www.youtube.com/user/mdandersonorg – A YouTube page of videos provided by MD Anderson Cancer Center
http://www.new.facebook.com/pages/M-D-Anderson-Cancer-Center-News/8760099910 – A Facebook Group called “MD Anderson Cancer Center News” that has various resources (RSS, Videos, Events)
http://www.cancerwise.org – CancerWise is an online newsletter published monthly by The University of Texas M. D. Anderson Cancer Center. Each issue includes a cancer survivor’s story, related Q&A with M. D. Anderson experts, the latest reports on cancer treatment and research and tips for cancer survivorship and prevention.
This is another example of the dedication MD Anderson has to “Making Cancer History”. Maybe you might find some of the resources useful. I have queued up several podcasts to fill up my iPod Nano….
Thanks for all the prayers. I had an outpouring of supportive emails on my way out to Houston. It was nice to have that support going out to the checkup. I will post up my CT results later this week.
CAT Scans are negative!
9/7/2008 10:07 AM
CAT Scans came back last week and they are negative…. and yes that is a GOOD thing. So my 1.5 year checkup was a success!
Thanks for everyone’s thoughts and prayers. And sorry for taking so long to update my blog :).
Tommy Ryan's Weblog 
[…] My Cancer Journey […]
By: 1.5 Year Milestone Achieved | Tommy Ryan's Weblog on March 13, 2013
at 8:31 pm
Thank you so so much for writing this blog. I had to go through the same process this past year. But, your blog helped me get prepared for what was coming. U have referred your write ups daily as I was in treatment. God bless you !! Thank you!!
Misha
By: Misha on September 20, 2016
at 4:12 am
[…] came during our fifth year in business. Tommy was diagnosed with stage 4 Hodgkin’s Lymphoma (you can read his blog here). He ended up going out to MD Anderson for a stem cell transplant. While he was out of the office, […]
By: ThreeWill Story (from Danny Ryan’s Perspective) on December 12, 2018
at 12:10 pm