Last January I shared a health update that I entitled, "Climbing My Mountain Step by Step". In this post I shared that while I was growing up my parents consistently played christian music including Psalty, Colby, and GT and the Halo Express. Each of these records and tapes (yes, I lived in the "olden age" *smiles*) were filled with scriptural messages and truth and even had scripture put to song. To this day, I can still remember almost every song on each record/tape and one specific song from a Psalty tape. (It was the one where they went camping.. I believe "Psalty 5" *smiles*) This tape had a song entitled, "climbing my mountain". The lyrics, although they are almost 30 years old still speak to my little heart:
"When something seems to hard to handle,too big to conquer, too far away to touch, when all your dreams begin to shatter, and deep inside you you're hurting, oh, so much, That's when it's time to say....
(Chorus) I'm climbing my mountain step by step, I'm climbing my mountain day by day, I'm climbing my mountain all the way, I'm climbing my mountain, I'm gonna make it. One step at a time, One step at a time, One step at a time with Jesus by my side, One step at a time, One step at a time, I'm climbing my mountain one step at a time.
Even though you might grow weary Don't be discouraged, in your weakness God is strong, Remember this, He'll never leave you, He won't forsake you, He's your strength and He's your song So sing and start to say... "
And just like I shared last January, I have been having this song run through my mind so often over the course of the last couple of weeks. I know that so many of you have been patiently waiting to hear updates (thank you so much for all of your loving text messages, cards, presents, etc. these past few weeks!) and I appreciate more than you can know your sweet understanding as I am learning to climb this new mountain step by step.
Two weeks ago I started a new round of IV meds that was to be added to my protocol. This specific IV med was to last six weeks and was to help specifically address an issue that had been found in some recent testing. It had been a long fight to get the med (and so many of you were graciously praying about this issue) so I was very grateful to start it. At the same time I had been sufficiently warned that there are many unpleasant and difficult side effects (which there was) and I was so grateful for your prayers.
Three days later I started to notice that "Nic the PICC" was acting a little "strange". My amazing medical team had discussed fully with me all of the things to be careful and watch for in regards to having a PICC line, so after following their instructions we made the decision to go to the ER on Sunday morning as my symptoms were increasing and I had a feeling that something was "off".
When we arrived at the ER I was immediately taken back and saw a wonderful doctor who examined "Nic the PICC" before quickly getting me back for an ultrasound. Within several hours the decision was made that "Nic the PICC" would have to be removed due to a large blood clot that had formed. The size of the blood clot and the location of the blood clot warranted the removal, but I do admit that I was overwhelmed and cried. After "Nic the PICC" was removed I still had tears. Honestly, the whole thing was overwhelming as I knew that more than this removal, I was looking at a whole new treatment plan that most likely involved a port (something that I had been prayerfully hoping to avoid).
In the midst of all of this uncertainty and trauma, I had such peace though as I knew that so many people's daily prayers for this journey were once again answered. The ER doctors commented several times that they were amazed that "Nic the PICC" had no infection, that the blood clot was so large but that it hadn't moved or traveled (which could have been extremely serious), and one even commented, "well something is looking out for you" and listened as I had the humble privilege of sharing the gospel with him. I am amazed and humbled at the prayers of so many that are covering me in this journey, lifting me up to the Lord and are reaching so many people. You are truly a blessing.
We returned home late on Sunday evening and the beautiful view and rainbow ono the way home gently reminded me that Yahweh charts our course and will lovingly and tenderly carry us throughout our days.
On Monday we headed back to the hospital for my follow up appointment with the hematology department. I have to say that the whole department is wonderful. I walked in on Monday afternoon feeling so overwhelmed, so tired, and so apprehensive and the Lord definitely used this appointment in so many ways. I was given gentle and thorough instructions that included several new medications (including some shots). The cost of these medications is tremendously expensive so we are praying for the Lord to provide each thing that I need in the days and months ahead.
On Wednesday, I asked for prayer for the appointment with my main medical team doctor (in California). Thank you so very much to all of y'all who were praying for this appointment. As I shared on social media, I so appreciate all of your words, so many kind texts, and all of the prayers that were guiding this appointment. I also appreciate your kind understanding as I digested the information that was given and the next steps that I am looking at for treatment.
I have shared a quote that I came across this summer many times. It has truly pierced my heart with its truth, vulnerability, and its grace. It said:
"Interestingly enough, the most asked question in the whole Bible (from Genesis to Revelation) is "How Long, O Lord, How Long?" And the most repeated command from God is, "Do not fear" or "Do not be afraid". The people of God consistently cry out for relief, and the God of love bids us to trust Him."
How absolutely true. As I find myself consistently crying out with, "How Long, O Lord, How Long", God in His grace and mercy doesn't provide that exact answer, but instead lovingly bids me to trust Him. Wednesday's phone appointment was another moment of learning this difficult but important lesson. In many ways I am not sure why talking to my doctor on Wednesday was such a difficult experience. To be truthful, going into the conversation I pretty much knew what was coming and yet, there was a part of me that hoped for the news to be completely different.
Before the conversation one of my closest friends asked me, "Is there a specific outcome or course of treatment that you are hoping will be the next step?" And I just broke down crying. I knew that for my particular case that the best course of treatment would be to go for the Port and continue IV therapy at a consistent and daily rate, but in a thousand different ways I am ready for this part of my story to be done.
The truth is that nothing in the appointment that I was told is a surprise. The topic of IV therapy and the possibility of a port had been introduced almost 2 years ago when I first started with this medical team, but as those of you know who have been around here for a while know it took almost a year to get my body stable enough to move forward at all. Then began the slow and arduous task of introducing antibiotics and then heading into the summer regime of treatment of a mix of IM shots and IV therapy till now which has been several protocols but mainly using IV therapies. One slow step at a time.
And this is the next step. It's my next step... a step that will bring me closer to healing and closer to the end of this incredibly tough journey, but I would be lying if I would say that it is an easy step. Anyone who has had a port placed after issues with a PICC line knows that it comes with risks, and is obviously being placed for serious reasons and that IV treatment is not a picnic. Hearing the details left us all feeling quiet and sad, with a few tears.
Practically at this point I will need to wait until the blood thinners due their work and the clot goes down to a safe size in order to have this done. So we are looking at the end of May/sometime in June having the Port placed. As the weeks ahead progress I will keep you updated. The reality is that at this moment this is a "watch and see" process, which as y'all know is not my favorite thing. *smiles*
I have also been placed on a couple of oral antibiotics for the Lyme to keep my body moving forward in tiny pieces and will continue to do IV alternative therapy weekly until the port is placed.
And so, as the song so adequately states that I shared at the beginning of this post, that is exactly what I am doing. I am climbing my mountain step by step, day by day. People have asked if I have seen improvements with "Nic the PICC" and my resounding answer is "YES". It is absolutely amazing to think of where I was two years ago starting with my amazing medical team in March, barely able to eat any foods, in incredible amounts of pain, often using a wheelchair, my digestive system a complete mess, in and out of the hospital with anaphyalatic reactions once or twice a week to a year ago when my body was slowly starting the long journey of healing to where it is now. The sacrifices that so many people have made to let us live here this year and to receive the treatment I have been have truly set the course for true and full healing. To be honest that was part of the emotional response of loosing "Nic the PICC". I felt that all of the gains have been interrupted.
But as always on this journey things have shifted and the God of love was not surprised by this interuption or change of plans. As my doctor said so eloquently, "we let go of what we can't control and we do the best with what we can". For this planner addict these are difficult words to hear but at the same time they bring a freedom and with them a truth from scripture about "not worrying about tomorrow".
As I mentioned I have been put back on a couple of the oral antibiotics and to be honest... its been... difficult already and we are only a few days in. We are praying that after the first couple of weeks I will be able to do a little bit better, but would covet prayer. My digestive system is still very fragile so we are praying that I can tolerate this course of action with no serious side effects.
Some additional prayer requests that I have that I would covet prayers for are:
(1) That I would remain stable in this period of time. There has been SO many changes in the last 10 days that my system is reacting severely to and I am having extreme difficulty with many symptoms including dizziness/vertigo and shortness of breath/heart-racing. Everyone is convinced (myself included) that this is just a reaction to all of the changes that have happened with my body, but we covet prayers that these symptoms settle down.
(2) I also covet prayers for my heart emotionally. I don't mean to be cryptic, but I would covet prayers as I had to make a wise yet painful decision in ending a friendship that had become very toxic and manipulative over the course of the last several months and was starting to affect my health. Y'all know that I love people and love my friends deeply so this was a wise decision yet it has also truly grieved me. I look forward to Heaven where everything is perfect and there is no pain in this way. (P.S. - the Pastor that I listen to weekly had a wonderful wonderful wonderful three week sermon on friendships that couldn't have been more of a "God-timing" and so challenging and wonderful. If you are looking for a wonderful pastor to listen to who will challenge and encourage your walk with the Lord I can't recommend Jason Tippetts enough. You can find Westside's church sermons HERE.)
(3) Finally... finances have been stretched to the limit these past 10 days as we have navigated these new waters and also are waiting to receive the hospital bills that are coming from the past two weeks. In addition to these things the medications that I need to be on (with insurance) are extremely expensive (thousands each month) and we are already planning and looking ahead for the upcoming trip to California to have the port placed. I would covet prayers for additional financial resources to come in the next few weeks as this is a very tight financial time. Some of you continue to ask how you can give- I am so humbly grateful- and the easiest way is to simply donate to the "Go Fund me Page" which is located below or on the left side of the blog.
As I think back to the song that I mentioned at the beginning of this post, I feel a mixture of emotions. Sometimes it seems like I am talking about someone else's life as I talk about "plans and drugs and medications" but I know that the Lord is leading me and guiding me one step at a time as we climb this new mountain. Sometimes it is hard not to think or worry or be concerned about the future or have questions or have a wide range of emotions BUT we only have today. So step by step and day by day I continue to climb my mountain friends.
Thank you so much for all of your prayers for this continued journey and for your sweet support. Your love, prayers, and support has made all of the difference in this journey.