Rory Medical Update

I guess I made a good guess with my last post that said you might not hear from me for awhile....

 

This last round of chemo has been brutal, and that is putting it mildly. I experienced more complications and extreme reactions than ever before. Ended up down at the hospital 3x last week, and freaked out nurses pretty badly. I am still struggling with side effects and some complications still, but improvements are coming....slowly.

 

On top of all of the medical drama, we had numerous other things spin out of control that left us floundering and scrambling sometimes hour by hour throughout the entire week.

 

We are very grateful to be done with this round of chemo. It seems my body is done with those specific drugs.

 

I went to my routine check up today and there is lots of news to share - both good and potentially not so good.

 

My Dr. was more than concerned about all of the extremes that I experienced this round, and that I am still struggling with many of them. She is most concerned about my fainting spells that are continuing and that they were so bad this last week. Sounds like another "not norm" and unexpected side effect that most others never experience. Would be my "norm" to do things that arent even on their list of things to worry about. Did lots of those this round, which is why we had everyone so freaked out.

 

She also told me point blank that if my health does not "significantly improve" in the next few days that she is postponing my next round of chemo for 2 weeks. This means that I need to be able to do personal care and basic life skills (eating, dressing, showering, walking, etc) for myself without needing significant help and without any fainting spells. If I can't, we re-tweak the schedule - chemo, injections, dr appts, everything. We also will deal with the very real possibility that if I dont respond well at all in this next set that we will continue to reschedule as needed. These are not insignificant changes, and could mean an even rougher go of things vs an easier one....

 

I also found out a more realistic time frame for the rest of my care. I still have 4 chemo treatments left. When those are done, whatever time frame that may be in, I will then have a 2 week follow up for labs, then be scheduled for additional testing like more MRI and such, then given at least a 4 week recovery window before surgery will be scheduled. Surgery recovery time will depend on what needs to be completed in surgery itself - that is a total unknown still because they wont really know what needs to be done until they get in there. They will go from MRI results and any other tests, but the physical surgery itself will determine recovery window. After surgery recovery and I am free and clear from everything the oncology team needs to see and determine, I will still have a last surgical procedure to have the port removed.

Adding all of these weeks together for everything, we are most likely looking at school being out before I am totally cut loose. The news really just blew me away.

 

Needless to say Mags was a kind prisoner to all of my sobbing and lamenting on the way home.

 

In the midst of all of the potential challenges there was some significantly good news that pleased my Dr very much. I always get a good going over from her to make sure there is nothing she is missing. Breathing was good, even with my shortness of breath, which seems weird, but nurses have confirmed that my oxygen levels have stayed stable, even with the struggles. My Dr was extra excited that no matter how much she digged, she could not find the problem lymph node under my arm. She also said that the tumor is changing in consistency - no longer the solid hard "bouncy ball" - but that it is softening. She had no way to check for the satellites from the tumor which only showed up in the MRI/PETscan. Both of these are exactly our purpose in doing all of the chemo before surgery. Having the hope to completely take out the lymph node and satellite concerns completely changes the surgical options and gives me tons better chance of less complicated surgery. Both of us were very happy with my exam. Will take the tender mercies anywhere and everywhere we can find them and be very grateful to Heavenly Father for being in charge even when the control freak in me cries my eyes out over all the overwhelming stuff...

 

Really hoping that things will continue to improve this week. Please continue to keep us in your prayers to know what the best choice will be for us to make about postponing treatment or not. I know ultimately it is up to Heavenly Father, but all of your prayers sent our way really do mean so much and have been a great strength to all of us.

 

I also need to try to say a great big THANK YOU here to so many of you. Meals have been amazing, and perfect for everyone, esp the little kiddos. Thank you to all who have taken our request to heart! Thank you to all who continue to send gifts and treats and cards and emails and such. On my worst days, it is wonderful to open a card or note and know that I am being thought of, and the kids are loving all the extra sweets that are sent for them too. Thank you to all of our amazing family who were here during the holidays and helped with kiddos, food, shopping, gifts, and everything WOW that you did for me and Preston and the kids. Thank you just will never be enough to express our gratitude to all of you. Thank you to all of you who are my children's teachers and for the love and care you extend to them as you teach them the gospel and so many other things in my absence. It is wonderful to me to talk with them and see them all lighted up about the things they are learning. Thank you to all of the sweet sisters who continue to care for my children when I am not able to do so myself. The kids look forward to all of the playdates and come home so excited about all of the fun they have had. Thank you to all of the dear sisters who continue to be my chauffeurs to all of my many appts and for being patient and kind "prisioners" to listen to my chattering and to my tears that I just cant seem to hold back these days. You are always sweet and so very kind to help me get everywhere and to listen when I have needed to chat. It has been special time for me to just catch up and to get that special time with each of you. To all of you, I hope that someday I can write to each of you individually, to thank you personally. Until then, please know our hearts are filled with gratitude for all that you have done and continue to do for our family.Thank you so much.

 

My most heartfelt gratitude goes to my dearest angels - my oldest children. No one else really sees the daily minute-by-minute that goes on here at home, esp on those days when I am most ill. My girls have gone above and beyond this week as they have cared for their siblings and have cared for me. They have had to help with my most basic needs - walking, eating, moving, dressing, etc this last week. Never once have they even made a single fuss, never once have they grumbled. They have cared for me with tender hearts and great compassion, esp when I have cried and apolgized to them for being so helpless, even when I know that we have all been scared at the situations we have been through. They have been my angels through every hour, and my greatest blessings.  I must also include John and Caiden with the girls. They are both my oldest sons. They have checked on me, made sure that I have been comfy, made sure I was safe as they have been my escorts at church or here at home, they never blink once when I need to take my hats off here at home, they each do so much to help me and comfort my heart. They are as tender hearted and as compassionate as my girls, and I am truly grateful to have such wonderful young men.

 

And my dearest love, where do I ever begin to describe this wonderful man I am married to. I know that there has never been one as tender or kind or compassionate or loving or patient. He lives to fill my every need, to care for every basic task, to hold me when I cry and do all he can to make me laugh. He reminds me daily that this experience was not my choice, that nothing is my fault, that all who care for me do so willingly and without hesitation. That many others are effected because of what we are going through, not because of me. That I am not a burden. Maybe someday I will be able to believe him. He continues to make great sacrifices of his own needs to put me and the kids first. He continues to be a valiant example as he also continues to work so very hard and to serve others at work, church, military and school. He daily juggles many balls and wears many different hats, and yet still in the midst of these is his unending devotion and care of me and our family. I know there was never any other woman who was loved so much. He is truly my greatest gift and blessing from Heavenly Father. Thank you, my darling, for everything.

 

And of course I would be greatly remiss if I did not express my great thanx to Heavenly Father. I know He is aware of every minute of every day. He continues to send more tender mercies than we can ever count. He continues to be patient as the control freak in me submits to tears on a daily basis over things that are completely beyond my reach or ability. He continues to send angels to us who care for our family and all of the little needs that we are unable to fill for ourselves right now. He continues to oversee the amazing care that I am receiving and sends those exact medical staff that will best care for me and that are willing to continue to take on all the curve balls we keep throwing. He never gives up on the person He is hoping that I will become through all of these months of learning experiences, even when I give up on myself. I will never understand the why of these months, or what He is hoping I will learn or become. Maybe someday He will explain it to me. Until then, I know that we are truly grateful to Him in all things, and through all things, and we will continue to strive to show Him that we are.

 

Guess that is all for now. Maybe there is just TMI here, but I needed to get it out of my heart and mind, and onto "paper". Will try to do short updates as I can, and will for sure keep everyone posted if we do end up with postponing things. Thanx again to all for your love, kindness, support and friendship. We could never get through this without all of you!