About two months ago I saw a request for volunteers for our church's refugee ministry in the weekly email bulletin. It was for help in the office, administrative things like updating databases, organizing and helping the volunteers stay up to date. They were asking for 1-3 hours per week and I felt a nudge. I have the time. And I should be able to find the energy to put in that small amount of time every week. I emailed the contact and we had a meeting, agreeing on me coming in one morning a week for a few hours. Now mind you...this was all for background stuff and I had never even learned much about our church's refugee ministry. Shortly after I started volunteering, the ministry had a meeting and I was asked to attend. We had thought that the meeting was going to be on administrative type details....how to keep it organized, how to keep everyone in contact and updated, etc. It turned out to be a meeting about an upcoming fundraising meal they wanted to put on and other volunteer details like what current and new families needed, etc. At the end of the meeting, one of the organizers mentioned that there was a family that needed to be taken grocery shopping and asked if anyone could help out. I felt another nudge. I volunteered to take them and we set up a date and time.
What an amazing experience it was. The family did not speak any English so shopping was definitely a learning curve. I took the mom & four children to the grocery store while their dad was in English class. The experience opened my eyes and my heart to a whole group of people who need the love of Christ shown to them.
"When you reap the harvest of your land, do not reap to the very edges of your field or gather the gleanings of your harvest. Do not go over your vineyard a second time or pick up the grapes that have fallen. Leave them for the poor and the foreigner. I am the Lord your God." Leviticus 19:9-10
After our grocery shopping trip, I volunteered to get the three oldest registered for school since they had already been here a month without it. During this time, my husband thought what I was doing was great but showed no interest in coming along side me in this ministry. But all that changed one night when we watched a documentary on Netflix. It was Jimmy's turn to pick and he decided on one that he thought was going to be about hip hop artists and their gaudy jewelry. It was called "Bling". In a total God moment, the documentary was not about the artists but about the blood diamonds and diamond wars in Sierra Leone. Several hip hop artists traveled to Sierra Leone to see what the diamond wars had done to the people of the country. Jimmy's heart was broken. He was appalled at the poverty and pain of the people of Africa and has been completely on board with me since. He & I started a Swahili language course in order to better communicate with any family we befriend.
This past Friday we brought the kids, a few games and the makings for brownie sundaes over to their house to visit. Even with the language barrier, we had so much fun. We taught the kids how to play Memory and the youngest kept trying to peak at cards. We brought early word flash cards and taught the kids English while they taught us the Swahili word. The family laughed at a lot of our pronunciations but I think they very much appreciated the effort.
Our two kids with the family.
We had a great time and are planning on seeing them at least once a week. We are also planning on meeting a second family this week. I can't wait to see how God moves in all of our lives.
I underwent my second (and final for the next six months HOPEFULLY!) treatment yesterday. It was an even better experience than the first treatment. They were able to tap a vein in two pokes as opposed to the four it took last time. It also went by more quickly as they were able to increase the IV flow more this time since my body handled the Rituxan well last time.
Two weeks ago, after my first treatment,Jimmy & I were both very pleasantly surprised at how light my side effects were. Minimal nausea, no vomiting, only a low grade headache and my worst side effect was the fatigue. So we were heading into this treatment with far less concerns. But on Sunday, the day before the second treatment, my nausea got much worse and I started vomiting. Since I got home from the treatment yesterday, the nausea is constant (I've been toting my puke bucket around with me everywhere), my stomach is revolting in other, unpleasant ways, there is a never ending buzzing headache and a low grade temp. I am also starting to lose big clumps of hair though I think that is to be attributed to the Methotrexate and not the Rituxan as hair loss is not a usual side effect for the Rituxan. I will keep an eye on the hair loss and will make a decision soon if we should go for the big chop.
To focus on the positive, my kids and husband are being so amazingly helpful. Yesterday, Aidan waited on me hand and foot, covering me with a blanket, bringing me my trusty puke bucket, constantly asking if I was doing ok. We also had another meal delivery from church which was just amazing and perfect timing. My devotional yesterday morning was perfect timing, as usual. It said "Your ongoing struggle is not a mistake or punishment. Try to view it, instead, as a rich opportunity: Your uphill journey keeps you aware of your neediness, so you look to Me for help." AMEN!
I don't want to jinx myself but I find that I am feeling somewhat hopeful that we've found a possible solution to the meningitis issue. It has been almost a month and a half since I've had an incident and that's the longest I've gone since September. I met with my rheumy last week and he has decided to wean me off the steroids in order to see if the Rituxan is working. I am so excited to be off the steroids! I am ready to take some of my life back from illness. It's the first time in over a year where I find myself able to look forward and see things besides continued hospitalizations in my future.
From what I have read of other people's experiences with Rituxan, it sounds as if I might even get some of my energy back for the next few months. Right now, I'm still dealing with some major exhaustion from the treatment itself but once that wears off, I have hopes that I will be able to become a bit more active. I would really like to shed these steroid-induced pounds!
I am so thankful to God and to all of the people who have been by my side through this. Without all of you, I wouldn't have made it far enough to see a possible light at the end of the tunnel.
Spending an evening on the couch with my amazing husband, watching documentaries
Having Fiona cuddle up under the covers behind my legs (the "batcave") in bed
Watching my teenager take on more responsibilities and growing into a wonderful young man
Cuddling with my baby girl on the couch watching "chick flicks"
Quiet time in the recliner with a good book, a blanket and two pugs curled up on my lap
Family game night
Church on Sunday mornings
Our daughters coming home and completing the family
Cooking & baking for my family and friends
Dinner & a movie out with my bestie
Traverse City trips with my husband
Pizza & movie night in with the fam
Family vacations with our full family, including the Bauer's
Days at the pool with my bestie & our kids
A cup of coffee & sugared doughnut from Phoenix Rising's bakery
Pedicures
Time spent in the Lord's word, meditating on His goodness, grace & mercy
Trips to amusement parks, beaches and zoos with the kids
Tapas with friends
A mocha frappe from McD's
Being a stay at home mom
A little Rex and a game of Skip-Bo with my bestie
Learning each day how to rely more on God and less on myself
Marriage to an amazing, loving, caring man who always takes care of me
It came as no surprise to me that I was up bright and early yesterday morning in preparation for my first chemo treatment. There was no way that I was sleeping since I was a nervous wreck. Not knowing how I would feel or my body would react to the treatment was nerve wracking. It was evident that I was a bit worked up when they first took my blood pressure which was 151/105.
Everyone at the infusion center was very nice. They put me in a private room which was a bonus since I ended up sleeping most of the day away and I never would have been able to do that in the main infusion room with all the other patients, their noises and the TVs going. I warned the nurses about my veins but I don't think they took me too seriously until they actually tried to tap a vein. Apparently the center has a rule that each nurse only gets two shots at getting a vein and then another nurse needs to try. Thankfully I only went through two nurses....on the fourth poke they struck gold (or blood as it were).
All set and ready to go! They started me on a 20 minute drip of Solumedrol and then we moved on to a 20 minute drip of Benadryl in addition to taking Tylenol orally. Once all the pre-medication was completed, they started the Rituxan drip. The way they do the drip is that they set the IV to stop every 30 minutes so they can take vitals and increase the drip. The pharmacist explained that a person's body would revolt if they tried to infuse the Rituxan at the rate of a normal IV right off the bat. They have to slowly increase the drip to allow the body to adjust to the medication.
I experienced my worst side effects within the first 30 minutes. I tingled all over and felt really nauseous. Once my body adjusted, I only had chills, a slight temp and a sore throat. They stopped the IV for 15 minutes when I complained of the sore throat. Apparently they don't mess around with any side effects! It went away and didn't come back until the very end of the IV. At the end, I had a slight headache and the sore throat along with some serious exhaustion. From start to finish, the Rituxan took 5 hours. Once the IV was done, I had to wait another hour for observation. I was finally able to leave at 4:30.
It was a long day...arriving at 8:45 and leaving at 4:30. I am so very glad that my rheumy chose the two week infusion instead of the four weekly infusions. I go back on March 4th for my final treatment and then I have 6 months before my next one.
After arriving home yesterday evening, I was mainly experiencing exhaustion with a sore throat, nausea that came & went and a slight headache. I went to bed toting my trusty puke bucket but thankfully, did not have to use it. I don't have much of an appetite at the moment but that won't hurt me much. Other than the lack of appetite, I am still bone weary with a sore throat. I know that most side effects show up within 24 to 48 hours of the infusion but if this is the worst of it, I am so blessed!
For anyone who has been with me on this blogging journey, you know that I have been dealing with reoccurring aseptic meningitis. For those of you who are just joining me, I suffer from Primary Sjogren's Syndrome (read more about that here) with neurological involvement. Sjogren's (or SJS for short) is primarily an autoimmune disease that attacks the moisture producing glands in the body. This may not sound awful but imagine having such dry eyes that your corneas are scratched and you can't see. Or not producing enough saliva (which is what keeps your enamel on your teeth) and having severe tooth decay. Not the end of the world but highly uncomfortable and a big blow to someone's self-confidence.
In my case, in addition to the aforementioned symptoms, I also have reoccurring aseptic meningitis. Since December 2011, I have had meningitis 8 times, and have been hospitalized 9 times. The biggest challenge is that none of the doctors who have seen me, either in or out of the hospital, have ever seen a patient with this problem. For my first three rounds of meningitis, the doctors assumed it was bacterial even though my lumbar punctures were coming up negative for bacterial, fungal or viral meningitis. After my third bout of meningitis, I just happened to see my Rheumatologist for my semi-annual check up and we discussed this odd problem. He told me that it was a rare but possible side effect to my SJS. At this point, he put me on Plaquenil in the hopes of suppressing the SJS and therefore stopping the meningitis. In April, I was hospitalized again and the doctor switched me to Cellcept. While I was on Cellcept I was hospitalized in October so then I was switched to Methotrexate which is a pill form of chemo. I was hospitalized shortly after that for a second time in October. By the time I was hospitalized in December, both my Rheumatologist and the Rheumy in Ann Arbor that I went to for a second opinion decided that the Methotrexate wasn't doing me any good. This is when the Rituxan was ordered. It was scheduled for mid January but I was hospitalized the day before my first treatment.
I was finally feeling well enough to schedule my first IV infusion and that will be starting tomorrow morning. We're praying that the treatment works and that there aren't too many side effects. According to my research, there still isn't much known about these SJS related CNS issues and they have not yet proven the efficacy of treatments like Rituxan (see here) but we will keep praying. My friends and family joke that I am always the exception to the rule, and that if something weird can occur or go wrong, it will happen to me. Let's hope that isn't the case with this chemo treatment!
The last few weeks have been pretty uneventful health-wise. I've been feeling really well, all things considered, minus the ever present exhaustion. Thursday and Friday of this week laid me pretty low, with nausea & headaches but I seem to have rallied this morning which is a good thing. I start chemo on Monday and since I am not sure how I will react to it, I'd like to get the house cleaned, laundry done, food prepped, etc. in case it knocks me out like the pill form did. Other than that, I saw my neurologist this week and after looking at my MRI/MRA he gave me the all clear. My brain looks great, especially for all that it has been through in the last 14 months.
Beyond the medical stuff, life has been busy and good. My oldest became a teenager on the 6th. Where did the time go?
He went from this:
To this:
He's grown into such a wonderful young man, I am so proud of him! There are times when I catch myself wondering how their birth father & grandparents could walk away from them. How could you even want to miss out on all these glorious childhood & teenage years? What could ever possess you to think that not watching your kids/grandkids grow into their own personalities would be a good idea? **sigh** I just have to let it go and be thankful that I am not the one missing out.
Other happy moments in the last few weeks included the beginning of a volunteer stint at church in our Refugee Ministry department and a sweet Valentine's Day dinner with my family. I'm very excited about the volunteer opportunity. I can already tell it's going to be fun and very fulfilling.
I'm looking forward to a quiet weekend with my family. Girls night with my littlest tonight and church with the family tomorrow. God is so good!
