When the rubber meets the road

The fatigue is amazing ... I wake in the morning and hope I will feel normal as I get moving. Day after day I just can't believe how heavy my body feels. I describe it as the feeling of having concrete in my veins. I am slurping coffee, trying to feel some spark. But I really don't.  I love having people over, especially the grandkids. I just crave being able to lay down most of the time I get with them or anyone else, however. And I hate it.  I am going to an Acupuncturist (Joe at Springs Chiro). He promises to get my Chi moving. I haven't noticed any changes in about a month of going weekly. I see a Lymphatic Massage person who does this electrical lymph massage invented by Skye whose wife I used to see in So. Cal. I felt a bit lighter on my feet the first time I went to her but nothing really the 2nd time (Lisa). I've been going to a massage therapist once monthly - mainly trying to get some relief from what I describe as a pinched nerve in my scapula (Tanya). I need...

 I look back on my life and see so many blessings. They've come mostly in the form of people. Sure, I could dwell on the earthly dad disappointments, especially on Father's Day weekend that has given me some melancholy days in the past.  We just had dinner with dear friends who drove all the way to us after an exceptionally busy day of graduations and family celebrations up in Denver. They are older than us and represent "The MOO Patio" to me, meaning the patio attached to our previous church in Southern California. There were people, like these two, who had all their own stuff to deal with yet showed me so much love and support that "The Patio" became the main reason I attended that church for many years. I've thanked the pastors for the steady ship they created there - where we raised our boys and sought God - and found him ready to respond with love - always!  Today was a tough day. The grandkids came over at my request to make planned Father's Da...

 ... that I AM better. I'm a bit discouraged now that Dr. Haverkos told me the norm is for people to improve up until the 4th month (I'm about 2.75 months in) on the clinical trial drugs and then they generally maintain from there. I look weird and am so heavy. I have swollen lymph nodes on the front and side of my neck that change my appearance completely, and I definitely have the Prednisone moon face. I'm very over weight.  I feel heavy in my body, like I'm trudging through mud when I stand or walk most days. I'm doing 5 mg Prednisone one day and 10 the next and see a difference if I forget the Turmeric (joint pain and swelling) so I am being faithful with that.  I am really really tired a lot of the time but push through events I've scheduled. The night time meds help me sleep through the night, which is so awesome, but I believe it makes me groggy the 1st half of the next day.  I have a rash but it isn't itchy, so I am grateful. I still go to light ther...

I got sick the end of October and feel like I've been fighting a battle with my body since, with a very cherished break in January during which I hosted dear friends. I felt pretty good that month with lots of energy, thankfully.  February had me feeling like I was racing the clock. The lymphoma appeared to be "taking off," the way the doctors had predicted. I could have gone into the hospital and started CHOEP chemo but I was hoping to make it till I could start the clinical trial. I would picture myself trying to get on a moving Merry-Go-Round that would moving too fast. Would I make it? I couldn't get in to see Dr. Haverkos until mid May. I was so so happy when I started it - it's just a simple combo of 2 drugs as I think I've described before.  Unfortunately, I started feeling worse and worse on it over time. I was scared to tell them how badly I felt but I was honest.  After meeting weekly with the clinical coordinator (Celeste)  of the trial and various ...

 I'm still adding the anti-nausea meds slowly. I think the one I take at bedtime is making it really hard to wake up in the morning. I doesn't seem to help me fall asleep, however.  I noticed some itching in the late afternoons/evenings a few days ago and it has increased until last night I more fully realized - I am getting no simple answers here. The rash is hot, raised, itchy, and red. It is worse on my arms and thighs and makes getting to sleep hard.  Dr. Haverkos thought the rashes would subside with treatment. We really have never known what triggers them or brings relief. They also look like the RA rash. I have some arthritis but who knows. I have had people suggest everything from changing to Irish Spring soap to taking B1 supplements, to Calamine Lotion. I've used the prescription medications and lotions. Nothing really helps - but some things like baths full of oils and salts and such seem to distract for a bit at least.  I did start something today suggest...

Since I use this blog as something of a medical journal, I thought I'd write down what has changed since a zoom appointment with a PA at the oncologist in Aurora, Kelly something. She specializes in the nausea problems for their cancer patients. I'm so conflicted as they stack medication after medication, advising me to not to start back taking any supplements, when it is common knowledge that some of these meds deplete the body of certain vitamins and minerals. No wonder so many patients go down hill.... 1st thing at wake up:   Levothyroxine 150mg. (I had my thyroid ablated with radiation many years ago because of out-of-control goiters)  Liothyronin 5mg  1/2 hour later - before breakfast take Omeprazone 40mg for stomach. I'm so uncomfortable with these drugs -  (Not starting yet until see how Olanzapine works) - at least 2 hours before or 4 hours after study meds.  1 hour later take Ondansetron (Zophran) - 4 - 8 mg. (currently taking) With Breakf...

I've just been ... getting through day by day. Dr. Haverkos warned the first few weeks of the trial could be rough, alluding to another patient he feels is similar to me - who he thought he'd have to hospitalize and put on chemo to shrink the lymph nodes piling up in his neck during those first weeks. He was very sick with die off too, but it wasn't happening quickly enough to make it safe. Fortunately he made it and it helped me those first weeks. I am now 6 weeks in, however, and I still almost always feel like I am just sick.  The rashes have subsided; I am so thankful. That was replaced by what I describe as a pinched nerve-type thing in my neck that has been driving me crazy for weeks now. It sometimes isn't there, but mostly is. Massage and icy-hot remedies give me temporary relief and my sweet hubby has been so patient and helpful with it. But it comes on and can make functioning pretty hard. I take Advil or Tylenol periodically; they don't always seems to he...