I’ve had another good week of treatment here in Houston. Since writing last time, I’ve had 4 more radiation treatments, and the lymphoma is visibly shrinking! According to my radiation oncologist, I will need 25 treatments, so they’ve scheduled me through June 17th. She is also insisting that I get the stem cell transplant at MD Anderson. I’m not sure of the timing of that, but I’m meeting with a stem cell doctor tomorrow (he also specializes in lymphoma), so I’m gathering up my many questions to ask about the process.

I’m still awaiting the results of the regular echocardiogram and the stress echo (which I completed yesterday). The doctor will call me to go over those results and also review the blood test results he ordered.

We’ve been able to throw in some more outings. I had a fun afternoon out with my friend who used to live directly behind us at home and Jonathan met up with 2 of his cousins for lunch last week. On Saturday, we spent the day in San Antonio. We saw the Alamo, the country’s oldest cathedral – San Fernando Cathedral, and took a tour cruise of the Riverwalk. It was really fun and relaxing, but I was worn out! I’m not complaining though – I have a new appreciation for getting out and about. This is a picture of Jonathan in front of the Alamo, and one of me on the boat tour. With a wig, sunglasses and large hat, I felt a little like I was in witness protection. 🙂

I’ll update soon with test results and the stem cell transplant process, etc.

Despite being 800+ miles from home, we are staying pretty busy with things other than treating my cancer. Thankfully, I’ve felt so much stronger since the chemo devastation has ended, and we’ve been able to have some fun when I’m not having medical appointments and Jonathan’s not working. Our first fun outing was a short trip to Galveston. It was a beautiful Saturday and we had some of our favorite food – seafood! The beaches were extremely crowded, but we were able to find a quieter spot to get a couple of pictures.

On Sunday, we went to Beth Moore’s church in Houston for the second time. No, we didn’t see her, but it’s neat to think it’s her church. If you aren’t familiar with Beth, she is known nationally for her Christian books and video Bible studies. She’s extremely down to earth and real – her study on the disciple John was the first Bible study I attended back in 2003 (with a breast feeding baby in tow!). Anyway, I think she’s great! After church, Jonathan’s cousins hosted us to a relaxing afternoon in their beautiful home. We had a great time catching up with 3 of Jonathan’s cousins and 2 of their wives along with enjoying some delicious food.

Our oldest had her fifth grade graduation last night! Yes, we are now parents of a middle-schooler! Thank you to my parents, Jonathan’s parents and my Aunt Marianna & Uncle Gene for making her special evening a great celebration! One more milestone we will celebrate again later. . .

Okay, so, in addition to finally getting out into the world and socializing, there is also a battle going on to reclaim my health. I’m forcing myself to get out despite my ongoing baldness and the lovely addition of losing most of my eyelashes and eyebrows. Ugh! Radiation is going along fine. I had my 6th treatment today. The main side effects so far are redness, dry skin and swelling around my eyes. I think the lymphoma is flattening, but I’m cautious to get excited because of so many previous rounds of disappointment. I’m just trucking along, praying for healing and trying hard to be patient as I attempt to surrender it to God.

Because cancer alone is not enough, I also visited with a cardiologist oncologist this morning. I’ve had some chest pressure, palpitations and a fast heartbeat since beginning the second chemotherapy regimen. MD Anderson always puts their patients on beta-blockers prior to the cardiotoxic drugs I was given, so we are starting those ASAP to prevent any further issues and I’ll be doing a regular ECHO test Friday and a stress ECHO on Tuesday. Despite my physical exam and EKG being great, my symptoms and new resting heart rate of 90+ warrant a further look.

Phew! That’s a lot of stuff! Please pray for effectiveness of treatment and that no damage has been done to my heart. Thank you!

Two big things happened yesterday.  I had my first radiation treatment and I found out my sister is not a close enough stem cell match.

The radiation treatment went very smoothly. We had simulated it about five times before, so I was pretty used to the drill. In fact, the simulations took much longer than the real thing. The most challenging part of the real treatment is the tungsten eye shield.  We never simulated that before, so inserting a metal shield under my lower and upper eyelid has been a new experience.  I don’t recommend it, but just like everything else in this situation you just have to go with it.  Today I counted the actual time the radiation machine is clicking and shooting at my face. It is a whopping 22 seconds! That must be some powerful stuff.  The prep time is what accounts for most of the appointment.

My sister and I both received phone calls yesterday letting us know that the HLA testing was not a good match. The woman who called is getting a doctor’s order to start looking into the stem cell database for a match. She explained the genetics of stem cell matching. At this point, the best match will be an unrelated donor that matches 9 out of 10 genetic markers.  Because my markers are half from my mom and half from my dad, testing my parents and our children would not provide the best match.  Although counter-intuitive, going into the general population will provide me with a better match.  There are special circumstances where they can use partial matches or cord blood, but at this point (per this woman) it will be best to go with an unrelated donor.

Thank you to the friends and family who have offered to be tested.  If you are willing to “pay it forward” for me, bethematch.org can provide you with information on being tested for the database and helping people like me who are looking for a donor.

As you know, we have to find some moments of humor as we walk through all of this. I decided that Jonathan really needed to try on my wig, and why not my hat too? It got us laughing pretty hard. I’m pretty sure that God has given us the gift of humor to make times like this bearable.

Happy Mother’s Day! And a special thanks to my mom and Jonathan’s mom for tirelessly caring for our kids and home while we are away. It is hard for me to be apart from our kids, and today is especially challenging, but I know it is absolutely necessary for me to get well.

My first radiation treatment is scheduled for Tuesday. We simulated my treatment once again last Thursday and we will simulate it again tomorrow as well.  I feel stronger since having my transfusion last Thursday, and I’m confident that my doctor is planning my radiation with precision.  I’m ready to get this treatment started and to see some results.

My sister had her blood drawn last week and UPSed it to Vanderbilt to be tested.  We expect to hear by the end of this week whether or not she is a match for me. Please pray that she is a match and that we can go ahead and work on the details of this next step.

Our girls had a special outing on Saturday! It was their first time getting manicures and pedicures – they were so excited! They also had a nice lunch out afterwards.  Thank you to my dear friend, Marie, and her sisters & mom for treating them to a day of fun!

If you’ve read my previous posts, you’ll know that I’ve found myself using the word “Ridiculous” a lot throughout this ordeal.  It just seems to be my go-to word lately. Jonathan saw the photo on the right posted on Facebook. We thought it was pretty funny.

I’ll post an update after my first treatment and let you know the stem cell test results when we find out. Please pray for the radiation to be effective, that my sister is a stem cell match, and that I’ll be patient throughout this whole process.  We look forward to sharing good news this week. Thank you for all of your prayers!!!

We are praising God for good PET scan results.  The lymphoma is still only in the right forehead/eye area.  Thank you for your prayers.  We are so relieved it has not spread.

I had my first lead mask fitting and simulation this morning.  My doctor determined what angle is best for me to lie, where I should look during the radiation to prevent cornea damage and how well the mask fits – which it is fitting well.  We return for another radiation simulation tomorrow.  There will be another layer added to the mask and a tungsten eye shield has been ordered.

I had a blood draw this morning to check my counts.  My white blood cells are back to normal – yay!  Glad to get rid of the face mask when in public areas! My red blood cells, on the other hand, have dropped to 7.  This justifies why I’m so exhausted – even eating dinner last night was tiring. (Ridiculous!) They were going to give me a blood transfusion this afternoon, but by the time I had blood drawn (again) they determined I’d have to stay until midnight to get all of the paperwork done and 4-hour

infusion time.  So, I’ll rest tonight and have it done tomorrow after my radiation simulation.

We are still on target to start Tuesday, the 13th.  Hopefully by then I’ll be strong and rested.  Thank you again for your prayers!  I’m exhausted physically, but so grateful and happy to know that all of the cancer is still localized.

Today I had my blood counts checked, saw my radiation oncologist, had a wax mask made, ate lunch with a famous person and moved into a condo.  I think I’m exhausted just writing that out.  🙂

My white blood cells are up some, but my red blood cells and platelets are down. This may delay treatment until next week. I’ll get them checked again on Wednesday.

My doctor brought in an expert on making lead face masks for patients.  Apparently making this sort of apparatus is something they don’t do very often anymore.  There are other inner-machine methods to block where the radiation goes, but my physician wants to be extra careful about protecting my eye and vision.  That’s a huge concern to her because of the level of radiation she’ll be using and because she wants to radiate part of my eyelid. She marked my face with a marker and the technician made a wax mold to her specifications that he’ll use to make the lead mask. There will also be some sort of tungsten shield made for my eye.  It is quite a process.

My radiation oncologist also consulted with 3 experts on how best to radiate, and there isn’t a definitive answer – each has a different recommendation . . . electron, photon or proton.  Thankfully, my doctor is going to run different studies to determine what she thinks is best.  There is heavy calculation and thought going in to this.  She has assured me that I will get the very best treatment. It is wonderful to have that assurance from a doctor, especially after 3 surgeries and 3 regimens of chemotherapy.

In other news, Jonathan and I went out for lunch at a British pub.  We chose the patio so that I could avoid germs. After a little while, Jonathan asked if I knew who the man sitting next to us was.  I had no clue.  None.  He seemed so “normal”.  Jonathan said, “It’s Jeff Van Gundy.” As if that would ring a bell, but nothing was rung.  Anyway, I shot a couple of pictures of him.  If you know who he is, you may be impressed that he drove off in a very normal gray Camry – I like that humility.

We were bumped out of our hotel today.  There’s a huge offshore technology conference in town and they are booking all of the rooms.  We were told we might be able to extend our time, but then found out the price went up $100/night, so we checked out.  Meanwhile, a woman we had contacted regarding long-term accommodations said she had a sudden vacancy at one of her condos.  So, now we are in a temporary residence very close to MD Anderson.  We have a full kitchen and laundry, so we are in business.

Tomorrow is my PET scan at 3 pm.  This will show us where the highly active cells are, i.e. cancer.  We anticipate that it will “light up” on my forehead and in the frontal sinus, and we hope that continues to be the only place – it’s a full body scan.

Please pray:

• that my blood counts increase at a good pace
• that the PET scan does not show any new area of concern
• for the planning and decision-making of my medical team
• for the effectiveness of my upcoming treatment
• that my sister is a stem cell match

My appointment yesterday with my lymphoma radiation oncologist went well. She’s looking at this treatment from a different perspective than she did in February. Instead of just cleaning up behind chemotherapy, she sees this now as the definitive treatment for my cancer because of the chemo’s ineffectiveness. So, she will have to up the radiation from “30 gray” to “45 gray”.  She will carefully analyze where she believes the cells are/were based on previous scans, upcoming PET, computer software and measurements they made yesterday (that’s another story). This process takes a few business days.  She will try to protect my eye structures as much as she can, but that’s the biggest caution as a side effect.I feel confident that she will establish the best treatment plan for me.  I’m not an easy case, and I’m so glad that she will put a lot of time, effort, wisdom, and team-input into calculating this correctly.

I had my blood counts checked yesterday related to my last chemo.  My WBCs (immunity cells) are at a critical low – the lowest I’ve had (0.3).  So, the PA called today to tell me to be extra cautious and we went over all the rules for that.  The weekend may be a little less exciting than I hoped, but with my fatigue, rest is good.

Looking ahead, after remission a stem cell transplant will be needed. Originally they thought they could use my own stem cells, but due to the chemoresistance, I will need a donor.  They want any trace of these cells out of me for good! So, my sister will be tested as a possible match next week.  Thank you, Judith! I’ll keep you posted on that.

Also, thank you to the grandparents! Both Jonathan’s parents and my parents have been a great blessing to us.  They are so eager to run our household, and are pretty much experts on our home after so many months.  We were able to leave Nashville at the drop of a hat, and know that all would be well! And an extra thanks to my parents for, once again, assisting us without hesitation to get me back to MD Anderson.

Please pray for: the medical team’s wisdom as they compile scan information, photographs, measurements, computer models, and their past experience to make the right “recipe” of radiation for me, pray that my white blood cells improve quickly and I stay well, that my PET scan on Monday does not show any new cancer anywhere else, and that our entire family stays strong and happy during this period. Also, that my sister will be a match for my stem cell transplant.

Lots to pray for and a tremendous amount to be thankful for!  All of your encouraging words have meant the world to us. We are grateful and overwhelmed by your willingness to help us in any way we need. Your prayers are, above all, our top request.