Day 90. Answers...of sorts.

While many questions received their definitive answer, most were given various scenarios and possibilities. We learned that the ever famous GVHD debut was only the beginning. The upcoming show might not start until between 6-36 months. Praying that it's one show that doesn't open!

I have been given the go-ahead to start moving back home, but we are going to wait until the final 100 days so Paul can finish out the projects around here at Mom's and just to be on the safe side until I get my final test results back. Speaking of Paul, please pray for him specifically as his back has gone out in a bad way. Of course, is there a good way?!  He has been in pain since Sunday. He's always in some amount of pain, but this is the "take ya down" kind. Please pray for miraculous relief.

We also learned that when we are allowed to go home, we will be allowed to go to the country, as long as we have a plan of action in case of emergency and a fresh water source. That was exciting news to both of us!  While I have to be careful not to over do it, just getting to that place of rest and relaxation would be heavenly...once it cools off a bit!

We learned more about how long I'll be on my meds. Six months for some.  A year or more for others. Longer for a few. As I transition home, I will also transition back to my home oncologist over by Willowbrook and will hopefully be able to drive myself. I will miss my wonderful conversations with Bonnie and Renee who have faithfully driven me all these weeks.  We will have to connect in other ways.

As I go home, I will need to create a modest routine to include exercise and my nap, being mindful to maintain balance. The headaches seem to behave the best when that balance is kept.

I am going to be able to see my grandchildren as long as no one is sick, has been recently immunized, and my energy level cooperates. That alone ought to make me feel better. I still have to be very careful with any children under 12 for the next two years, until my immunizations are complete. Any children who come over or who are around me must wash their hands thoroughly (to the count of the "Happy Birthday" song) and change their clothes if coming home from school. Sounds drastic, but those are the rules. I'm just thankful for the provision.

One of the scary things we learned was that I will always, as in for the rest of my life, have to watch out for the earliest signs of a cold. I will always be susceptible to pneumonia, even though my lungs checked out great. I will not be allowed to ride out a cold like most of us do. I'll have to go in. :/

I will also have to wear a medic bracelet stating that I am a bone marrow transplant recipient and must have irradiated blood products. If I were in an accident and unconscious and given regular blood, the T-cells in the new blood would mix with mine and my donors reactivating the GVHD and kill me. We don't want to do that.  So I'll be getting the bracelet!

The first words out of their mouths continue to be, "No gardening!"  The are really serious about that one, much to my chagrin.  For a year.  Ugh!  But they have let up a bit on the house cleaning. If I use products that hold the dust down (like Endust, Swiffer, etc.) and wear my mask and gloves, then I can clean in small increments. Yay!  But I'd rather work in the yard....

With regard to energy levels, it has become fairly clear that it's going to be a couple years before I will be close to my old self. And even then, my new normal probably won't be anything like my old normal.  I am learning to embrace that.

Throughout this entire journey, we have learned to take one day at a time. I may feel fine one day and not so fine the next and have no clue why. What we do know is that God has been and is here with us every day. His mercies are new every morning. Great is His faithfulness!

Day 82. Today's Questions.

While today still holds nothing except questions, later this week and next should start providing some answers. Thursday is our first Survivorship Class, an hour and a half one-on-one class for Paul and I with a nurse practitioner to go over every question imaginable about the steps of going home. Sounds like I'll be taking a lot of notes!

Friday is my re-staging day when they re-do my labs, CT, and bone marrow biopsy. Fun times! It will provide information as to what stage I'm at now. They should have some preliminary results when I go back in next Monday. I have today off.

My headaches have been better this week. Not sure whether to attribute it to the increase in Topamax or simply to your prayers. I can never really find a pattern when it comes to the headaches except for increased fatigue. They just come at will. But I am thankful for a better week.

I am thankful for so many things actually! My daughter and son-in-law were able to buy a house in record time. It's adorable. It was totally a God thing. Paul's job is going much better. Mother got through the neck brace period. I have three adorable, healthy grandchildren who I will hopefully now have a lifetime to love. I got a commission check for work I did last fall. We have had the opportunity to stay with my mom without having to rent an apartment near MDA. I have been able to have several weekend home visits. My sweet husband has used the time here to build my mother a back porch cover. It's beautiful. I have always had a driver when I needed to get to MDA. We have had numerous meals made and brought to us. I continue to get stronger each day. The list goes on. And it's all God stuff. He either provided the way or the people.

Even when things are hard, He is good indeed! When there are questions, He is the answer.

Mama O Update

Yesterday, Mother went and had the procedure done for the BPPV, Benign Paroxysmal Positional Vertigo. From what we understand, it is one of the more common types. However, most doctors do not seem to have the knowledge that world reknown Dr. Horwitz, otherwise known as Dr. Dizzy, does.

For a fee, he does a procedure that is supposed to reposition the crystals in the inner ear and eliminate the dizziness and other issues. Part of the procedure includes wearing a neck brace for three days after the initial adjustment. No looking up, down, left or right. She must keep her head elevated above her body even at night. She has already complained of its discomfort, but we remind her of short term pain for long term gain.

Please pray for her this weekend that 1) she will be a good girl, 2) she will not experience too much discomfort, 3) and most importantly that the procedure will take the first time. She goes back in three weeks for a check up. What a blessing if this weird procedure would fix the problem.

On a second note, mother wore the heart monitor for a month without having one heart palpatation. The weekend after taking it off, she had four! Her skin was so damaged from the electrodes that they were giving her time to heal before starting again. Please pray that the next time she starts that the monitor will actually capture the readings soon so that she could wear it for as short a time as possible.

Thank you for your prayers for my mom and for me. My headaches continue at different levels on different days. I have been very tired this week. Other than that, I'm ok.

We have some dear friends suffering with prostate cancer and a place on his head. Please pray for John and Dian. My buddy, Dave Kinler, finds out soon about the stage of his lymphoma. It's not looking good. He may be next in line for a stem cell transplant. So many prayers. Such a big God!

Day 77. Two Steps Forward. One Step Back.

There have been several ways that I have seen steps forward. Each day, I have seen micro amounts of increase in energy. But it's an increase! One really good nap seems to work most days now. Some days still require two, but not all. Stretching sometimes helps my headaches. Sometimes it doesn't. But it always feels good.

Monday, however, was a step back day. It started with a day long headache, manageable but constant. It ended with it moving to unmanageable and throwing up all night long. I should have gone to the EC, but I just refuse to go back to the hospital and ruin my chances of going home. So we just toughed it out. I had an early morning appointment already scheduled, so I was trying to hold out. Paul toughed it out with me. We only got a little bit of sleep. By morning, I threw up one last time and that seemed to be it. By then, I had depleted my fluids, so when my lab work came back it was evident how much I had lost. They told me that if I threw up even one more time that I'd have to go to the EC. Fortunately, I didn't.

I did, however, fall asleep at every turn! As the appointment was very early, we were taking a different route that Renee hadn't driven. I fell asleep as navigator and we missed our turn. Oops. I fell asleep sleep sitting straight up in my chair in the waiting room, and Renee sweetly put her arm around me and laid my head on her shoulder. This happened several times. I think I fell asleep mid-sentence a few times as well. I fell asleep in the truck on the way home, but she knew the way. I took a nap once I got home and slept most of the afternoon. When I woke up, Paul was already home. I spent most of the evening dozing on his shoulder followed by a good night's sleep. I guess my body was really tired and needed to catch up on that rest. Is it nap time yet?

I learned from the doctor yesterday that these headaches are going to continue as long as I am on these meds, and I am going to be on these meds for a while. The anti-fungal/bacterial/viral meds suppress my immune system so it doesn't take over the new guys. The Tacro, which causes the headaches, suppresses the GVHD and keeps the new guys from completely overtaking the old guys. They change the balance little by little depending on my numbers until they can take me off both of them. It takes a while.

So the prayer still is that we can manage the headaches in the meantime. They increased my Topamax to 250/day. We'll see if that helps. They also increased my magnesium. I think that's because I'm not on IV fluids now. Pray that I am faithful to drink enough, which is a LOT. Please pray that I keep these dance steps moving forward.

Cha-cha-cha!

Day 70. Headache, Headache. Go Away!

Just when I thought I was doing SO good, I realized it was the drugs! The week and a half that I went without a headache was during the time that I was on the higher dose of descending steroids. The day the headaches started back was the same day that I started on my 1/2 pill. Coincidence? Yeah, I don't think so. Oh, well.

Now what? My doctors are convinced that my headaches are caused, or at least highly aggravated, by my Tacro. For now I still need to be on it. I am doing so well, however, that she is debating how soon to start weening me back. I'm a little nervous about that call because that is the med that fights against GVHD. So headache or GVHD??!

I continue to be an anomaly in this whole thing. But I do not want to take anything for granted. There are still side effects that can pop up months out. Because I "look good," the doctor and others sometimes forget that I am still sick. My numbers are in line with where they should be at this stage. Actually, they are a bit ahead. But my energy level is the same as other transplant patients. I just have hair and good skin color.

I have so much to be thankful for that I haven't had! I haven't had any skin GVHD, any blood products, or any mouth sores. I was reminded by my friend and fellow transplant buddy, Paul Pavao, that I am still very young in this process and have done exceptionally well. I have much to be thankful for! The power of prayer is undoubtedly what has gotten us to this point.

I also found out this week that if I can go all month without needing fluids or blood products that they will consider scheduling the removal of my CVC! Joy of joys! No more getting wrapped up before showers. No more doingy decorations hanging from my chest and poking from my shirt. No more being careful how I sleep on it. I too will carry the "badge of honor" scar.

For now, the main prayer request is the headache. It is daily. Constant at various levels. The meds are keeping it manageable, but it is draining. Pray for wisdom for the doctors in knowing how to best manage my meds.

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God."
Phil. 4:6

4th of July Celebration. When Will I Be Able to Really Do This?

Yesterday was an absolutely wonderful day! It started by my fixing breakfast for our little crew. I was excited about getting the day started! Then Paul and I went over to Steph and Derek's for a short visit and to pick up the extra bed to tote back to her mom's. We had already scheduled to drop me back off at mom's so I could have a quick snack and a nap, which I did, in preparation for the rest of day. I thought that would be enough.

An hour and a half later, I was awake and eagerly awaiting the arrival of my brother, Ron and Julie, and my son, Josh and Ky & Caleb. We worked together in the kitchen making side items and Paul got his yummy burger concoction stirred up. Nothing stressful.


Everyone arrived. Toy cars and trucks were retrieved from Mama O's toy closet for the third generation of children to play with. The new porch cover was already being enjoyed and utilized. Conversation bounced around like the balls on a pool table. It was music to my ears. Even on this smaller scale. Once lunch was served, Caleb ate almost two ears of corn! What is it with kids and corn on the cob?! :)

After Julie's 4th of July cheesecake (yum!), it was time for the girls to indulge in a game of cards...Hand & Foot, while Caleb ate watermelon and the more senior guys wandered back for naps. It was about at the beginning of the game that I realized how tired I was.

It doesn't matter that I hadn't actually done much other than conversing and piddling around the kitchen. My energy level is the first to go. People often get confused because I don't look too bad anymore, and I am not really one to let on when I am going down hill in the moment either.

Caleb was very good, but he was a 2.6 year old boy in his 80 year old Mama O's house with lots of things to touch. He especially likes the grandfather clock and the lamps. Your senses tend to be on a higher alert in such a situation, which I'm sure adds to energy zapping.

By the time we finished the card game, I knew that I had over done it. The headache was barreling down, trying to get the better of me. I've learned which drugs to take to try and stay "in front" of the pain. I must have already missed that window. Long story short, it ended up requiring my full arsenal to get it under control and by 2:30 am it was all gone. Slept well. PTL!

I guess my unanswerable question is this.... How long will it be before I can just have a somewhat mildly normal day of activity without it causing a headache? I guess I'll let you know when we get there.

For now, I wouldn't have traded one moment of yesterday. I hadn't seen the kids since May, except on Skype. To be able to just watch Caleb play and interact was precious.

As we celebrated the independence of this wonderful country of ours, I was personally reminded how very dependent I still am on those around me. I too am looking forward to celebrating a return to a higher level of independence while understanding the interconnectedness of all those who care for me.

Independent does not mean alone.

Day 62. Updates on Mom and Me.

Yesterday was mother's all day testing with Dr. Dizzy. Fortunately, the tests produced answers! She has a form of vertigo. This world famous doctor has an hour long procedure that can supposedly remedy the situation by rearranging the "crystals" in the inner ear and getting them to stay there. This is scheduled for Thursday, July 19. What an amazing thing! Please continue to keep her in your prayers.

I have had a good week. Up until Sunday morning, I hadn't had a headache in a week! Since then I have had two, but the pattern continues to be confirmed. If I don't get two naps per day, if I over do it, I get a headache. Period. For me at this time in the healing process, it all comes down to the necessary amount of rest.

Today starts my last week of ATC trips...Lord willing. Next Monday, I will start going to labs then to Dr. Shah's clinic. No more 3-hour IV's and free lunch. This, of course, puts a greater level of responsibility on me and my own personal care, which is all part of the process of getting to transition home. Mother, and sometimes Paul, are concerned that I will try to over do it when I get the opportunity to be on my own. What everyone needs to realize is that as much as you want me to get well, I want to get well every bit as much! I never want another round of nausea or another headache as long as I live. Pretty sure I'll have to endure a few more, but they won't be because of my making! Just sayin'.

While I wouldn't recommend this plan to everyone, I have learned a great deal of patience during this period. I have learned how many things can just be let go. I have learned to be the student again. I have learned that there are many things not worth saying. I have learned to be quiet. I have become a better listener. And I have rested. More so than I ever would have on my own.

Please pray as we enter what we hope is our last month away from home for continued strength and that the meds would continue on their current positive course. Pray for mom as she gives of herself to us and as she awaits her procedure. Pray for Paul as he continues to juggle two houses, his job, me, a porch project, and everything else.

Praise God from whom all blessings flow!