When the rubber meets the road

Today only took 3.5 hours in the IV chair. I'm feeling OK as long as I keep some food on the tummy - I just had some of my mom's recipe goulash my sister made for me while she visited. Perfect. The anti-nausea meds are pretty amazing these days - now that I take them properly. I suspect the next couple weeks will involve the pretty extreme fatigue. The last round I missed a direction to take Claritin or Zyrtec for 5 days after having a Neulasta injection, which is done through a patch-like thing, similar to a blood sugar monitor. I had terrible muscle/bone pain as a result. I won't make that mistake again. I had UTI's during the last round, which could be because it is harder for my body to fight off infection. The 3rd week was much better but I still needed to lay down sometimes. The doctor reduced the immunotherapy dosage today because I am already feeling some neuropathy in my fingers and toes.  I went to check out wigs since my doctor warned me I should lose the las...

I have felt blocked every time I've thought of posting these past weeks. The fatigue has been amazing. Thinking, reading, communicating has been really tough. I haven't been nauseous; what a glorious thing to be able to say. I get nauseas easily and it can wear me down quickly. The meds that help with that seem to give me muscle pain, however, especially in my shoulders which makes sleep a challenge. Then I got a UTI which warranted a trip to the ER. Unfortunately they didn't do a culture so they put me on an ineffective antibiotic. Once on the correct one, I thought we had it but it came roaring back and I am on another, stronger antibiotic again. All these meds effect the digestive tract which has brought discomforts too.  I find myself wondering if I will get through all this western medical intervention and be able to build back my natural health again. I sometimes fantasize about going back to OHI again with it's wheat grass and raw food or True North with it's...

 The good news - the port wine discolorations on my skin that looked like old lady bruises are peeling close to my normal color. The bad news - I've been dealing with UTIs - finally a culture to see if we are even treating it correctly came back with a new medication that is working. Sleeping is a challenge - I just can't get comfortable. On the other hand, the evening medicine makes me want to sleep late in the morning.  Monday I went in for chemo and an immunotherapy drug. I'm more nervous that the last time when I stayed in the hospital for some reason. Maybe it's because the physician's assistant asked me if I'm up for it. I have a PET scan Sept 9. That will determine if this is working. I can already tell lymph nodes are smaller. But I wonder if I will I ever feel normal again, with energy to plan and follow through on plans?  It is now Thursday. According to the nurse, this should be the hardest day. I can't really complain, as long as I take the anti-...