Friday, March 25, 2016

Cytoxan Round Six - Health Update

I am officially halfway through chemo! Woohoo! Last Tuesday I had my sixth of twelve infusions. It felt so great to hit that milestone. It has been such a wild ride these last many months, but I know if I could make it through them, I can make it through the final six.

This last round was pretty rough. Almost immediately after my infusion I began having an allergic reaction to the Cytoxan. About 5 minutes into the drive home my lips began to burn and swell. As the day continued on the swelling and burning sensation only got worse as my lips turned a horrible shade of bright red. One of my eyes lids began to swell as well, but luckily, there was no systemic reaction. I am a bit worried my body is trying to tell me it wants nothing more to do with this drug -- which would be just my luck. lol  Allergic reactions can become more sever over time so I am a bit nervous for my next round. I will be talking to my prescribing doctor about this reaction when I see him in two weeks; hopefully he will have some ideas in how we can curb this new allergy.

The rest of the four days following the infusion continued on pretty much the same as always, constant nausea and misery. However, thanks to Cannabis I only puked once! That's right -- once the whole week! It really controls the level of nausea well if you can find the "just right" dosing.

That's it for now! Hugs!

Friday, March 11, 2016

Sometimes Life Is Really Awesome -- Health Update

If you have been keeping up with my blog the last month, you know that this week held a much anticipated moment. This week was my "halfway through Cytoxan" follow up with my lung doctor. This appointment could either be a breaking point, or a huge victory for me regarding the use of chemotherapy.
I can tell you I left that appointment in tears -- happy, happy tears!

Snorkeling or preforming a PFT?!
Thursday morning I went in for my Pulmonary Function test, a procedure that breaks down the performance of your lungs. Ten months ago my lungs started to decline rapidly, suddenly showing evidence of Interstitial Lung Disease (pulmonary fibrosis) in both lobes, and a Chronic Obstructive Pulmonary Disease (COPD). Between my poor working diaphragm due to myopathy and fibrosis, I was placed on supplemental oxygen, unable to keep up my O2 saturation. Eventually the issue became severe enough that I was on oxygen near 24/7. Lung involvement is the number one cause of death for Systemic Sclerosis (Scleroderma) patients, especially when it begins aggressively in the first few years of diagnosis. Many physicians will tell you the first five years of your diagnosis are the most important, laying out your prognosis, and the severity of your disease. Being only four years into my diagnosis, on a feeding tube, supplemental oxygen, and having a few less fingertips than I should, meant I would be even less likely to live the ten years I was given in 2011. Things were not looking good, hence the tough decision to start Cytoxan was made. I say "tough decision" because this drug is extremely dangerous in a patient like myself with fragile organs. It also has a very high incident rate of causing both Bladder Cancer and Leukemia. While Cytoxan has saved many patients, its results typical only last five years until the patients body begins to progress again -- and at that point they have already reached toxicity for this last resort drug, leaving them completely out of treatment options... That is the reality I may have to face down the road. However, as you might have inferred, the next five years at that point wasn't something I was sure I would live to see anyway, so I agreed to the treatment with the support of my Scleroderma Specialist from UCLA. 

While my lungs still aren't functioning fabulously, I am getting more oxygen into my body! That is a HUGE VICTORY! My Diffusion Capacity (DLCO) after six months of Cytoxan increased from a 20% and I could not be more happy! I don't think my DLCO has ever increased in four years! As I expressed, I am using my oxygen much, much less and this is why. Cytoxan is healing my sad little lungs! All be it, they aren't perfect, but I feel so much better with that 20% increase of oxygen! My O2 saturation is staying relatively stable as long as I am not doing to much physical activity, or sleeping! haha *happy dance* In fact while I was preforming the PFT the technician did a double take on my DLCO values and said, "Wow, did you recently change medications?!" to which I of course chimed in with an enthusiastic, "YES!" 

As you can imagine my Pulmonologist was thrilled! He still wants me in every few months to preform a Pulmonary Function Test, as I still have obvious evidence of lung disease, but was delighted to say my lungs are "almost stable!" I haven't heard the word "stable" in regards to my health in years! Remember, stable doesn't mean "remission, cured, or healthy," it just means "not declining."  I am so thankful for my Pulm, he has fought so hard for me over the last couple years. He has always treated me with respect, and acknowledged the strong voice I have in regards to my health care. He likes to call my Rheumatologist my quarter-back, but in reality he does more for me than any other physician. He is always a simple email or call away, and never hesitates to assist me with any issues I have with my health, or health care team lol -- So thank you!

I am also really excited to report that after three years of struggling with weight loss due to my failing digestive system I have reached the goal weight we set back when we placed my feeding tube in 2014! I stepped on the scale to see the number 151 flash back and me and just about lost it! I have been working with my dietitian and physicians for years to hit the 150 mark, and I am finally there! At the climax of my weight loss I was 5'10" and 119lbs. I frankly looked like death; skin and pointy bones with the horrible paleness of severe malnutrition. I have gained 30lbs and feel amazing! My feeding tube is responsible for most of that weight but, within the last six months Cytoxan has increased my ability to digest and swallow, resulting in assistance with my overall nutritional status. My oral intake is increasing for sure, not perfectly, but something is better than nothing! Swallowing anything still feels like sticky peanut butter since my muscles no longer work, but at least once I get things down the are moving through my stomach! My SIBO is better too! I have been able to cut back my chronic antibiotics drastically, with the end goal being only using them during a flare up. 
Last, but certainly not least, my Prednisone intake is now at 7mg. So far so good. No crazy Vasculitis flare ups, or intense bought of inflammation. Yahoooo! By summer I should be off that horrible steroid -- and possibly be able to see my cheek bones again! ;) 

Oh, and one last physician update! My allergist and I caught up this week, and we came to a conclusive diagnosis: Chronic Urticaria. This literally just means I have hives a lot. He said it's actually really common, and just annoying! lol I'll absolutely take chronic hives over the other possible causes it could have been! I think that may be the nicest diagnosis I have. haha So I am on antihistamines four times a day to keep the welts, angioedema, and itching away.

Can't go wrong with Marc Jacobs -- it's a fact.
I feel my overall emotional status has been well lately too. People keep telling me my aura has changed -- that I seem more confident and happy, which I love! I've been experimenting with different pain management, and beneficial mental health techniques as well. I have found that Cannabis gives me a much needed, tranquil break from the reality of constant pain and anxiety. I am able to sit back, forget my troubles, listen to good music, feel no pain, and just laugh. It's so peaceful, and gives me that break I desperately need to function happily -- when I am unable to do so on my own. The use of constant anti-depressants and opiates definitely weren't helping me, or my poor body that was being abused by their side effects. Yay for a useful, safe, organic treatment option that actually works. 

Plus I got a really adorable new backpack to hold my feeding tube supplies on Wednesday! Little things like that make me so happy. I hope everyone is having as good a week as I am having! :) And if you're not listen to '10,000 Emerald Pools' by Borns! It is my new song obsession... it's so serene.