Hi Jane, Lynn, and Diane:
Sorry I've been AWOL, I've been having a bit of a difficult time here. Now that my steroids are back to my normal dose I'm feeling really crummy again. Loads of joint pain, chest pain, and lower back pain.
I was suppose to see my PCM last Thursday, drove the 45 minutes down there and couldn't find a parking place and missed my appointment. I called the clinic and tried to get in but was informed I had to see the NP on the team or wait until 27 February to see my Dr. Well, the NP and I don't get along to well so I elected to wait. Needless to say, I cried all the way home and was feeling totally helpless and wanting to give up on taking all my medications. Managed to pull out of that feeling on the weekend.
Then yesterday, I went to see my Oncologist and Pulmonary Dr. I feel neither appointment went to well, first off my oncologist informed me that I've seen every specialist there is out there for my lupus. That I've tried EVERYTHING to treat the stupid disease and I've not improved one bit. The only time I feel good is when I'm on 40mgs or more of prednisone. Which I can't remain on that dose forever, I've managed to fracture and refracture multiple ribs in the past year.
So, he tells me that I basically need to ACCEPT this is the way my life will continue until I worsen and I die. He suggested I see a therapist to help with this, I informed him I was already seeing someone, and I'm not sure I can accept this. I have NO quality of life and I live in never ending pain. I told him that my Rheumy felt that I've maxed out on my MTX and I needed to cut back on the dose as it's affecting my kidneys.
The oncologist doesn't agree with that, of course not, WHY WOULD THEY ALL AGREE WITH EACH OTHER.
He feels that I need to continue at the dosage I'm at and possibly continue to go up on the stuff. The type of Leukemia I have, MTX helps temporarily keep it at bay for awhile. I asked him how much was to much MTX. He said there wasn't a limit, and IF he had to give me blood transfusion weekly that was fine with him.
He feels until I've met ALL four of his criteria for my leukemia to be UNSTABLE, it isn't safe to treat me with any other type of chemotherapy drug but the MTX. I happened to run into my PCM in the dining hall and told her what my oncologist had to say, guess what........she didn't agree with what he said. She still feels that the MTX is causing my kidneys levels to rise and feels I need to see a Kidney specialist ASAP. It's either the MTX, or after all these years my lupus has decided to attack my kidneys. Just what I need another organ to fail me.
My PCM said she'd talk to my oncologist and rheumy and let me know if I should go back to the dose I was on. I know that I've not had ANY MTX since the 10th of December. So when I saw my pulmonary Dr and found out the my hemoglobin was down to 9.4, I know it's not because of the MTX. That's my leukemia pulling it downward. Of course, she informed me that having a low hemoglobin will cause shortness of breath and cause my lips to be blue like they are now.
I've managed to set up another PET/CT scan for the 12 of February. I did ask her if the nodules "light" up again in my lung what was her plan. She told me that IF they "light" up again, she's either going to request a biopsy of the nodules in the lung OR she may just go ahead and send me to Thoracic surgeon and ask them to remove the nodules from my lung. Now, we aren't talking a small simple surgery here, but big time lung operation in the upper lobe. She said with me having leukemia and being exposed to heavy second hand smoke as a child and teenager, I'm in a higher population that get lung cancer. That every X-ray and Chest CT really looks bad and she's really questioning what's going on in there
So, here I sit really contemplating stopping all my medications. I mean I know I'm to wean off a lot of them, but....... I mean what do I have to look forward to, except that I'm going to get sicker and sicker, then die. Oh boy, that sure will be a blast, I know I should be so harsh and difficult, but I hate hearing the words "We've done all that we can, and really don't know what else to do for you". How do they expect me to hear that and NOT be affected emotionally by those words?
I just wish that they could step into my body for a day or two, I bet after spending 48 hours in my body they wouldn't say that to me again. I've fought so hard to stay alive and pull thru trial and trail. I mean I think I've used up most of my cats 9 lives, and I just don't know how I'm going to face getting sicker. I'm sick enough, I don't want to get sicker.
Do you think it's wrong of me to want to take the chance and treat me with the different chemo's and to heck with it hurting me? I need to do something other than sit here and hurt 24/7 and wait to feel worse. I mean I feel terrible ALL the time. I feel as if my immediate family is pulling away from me, one because they are tired of dealing with this crap day in and day out and the other I think so it won't hurt so bad when I die. I need them, I'm scared and I don't have them. I'm missing my parents so badly right now, I mean I know they know what's going on with me and are watching over me. However, I'd love to hear them tell me "it's okay, we're here we love you."
Well I guess I've vented way, way to much. Probably said more than you wanted to know. I've been cleared to return to pulmonary rehab as my oxygen saturation is sitting at 89% most of the time. I'm now up to 3 liters of O2 24/7. I'm doing PT twice week for my back and both feet. Dr ordered a TENS unit for me and I'm waiting to get it soon. Still doing my massage twice a month, which I desperately need, but can't get in until the 12th of February after my PET/CT scan. I've had a major headache for 7 days now, not sure why but please pray and send healing energy my way. I need the stupid thing gone and soon.
Thanks for listening and Jane and Diane thank you for asking about
me. Lynn I know you always have my back so thanks for letting them know I was okay. I hope you are all doing well, I'll be reading up on the CP forum to see how things are going for you both. Lynn I hope you're doing alright give your kitty a pet from me. Take care all and I hope you all have good day today.
DX- RA, Lupus, Fibro, LGL Leukemia, Obstructive & Central Sleep Apnea, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.