Today was basically a follow-up appointment to review Lab Results and discuss future treatment. I saw “Jan” the Nurse Practitioner. She did my last bone marrow biopsy, which was performed on 9/21/07. If a bone marrow biopsy can be somewhat not as painful without being drugged up, Jan can do it. Either that or I was anticipating way more pain than actual. I guess there are times when a person “gives marrow” more easily than others. I just recall Jan telling me that I was giving marrow more easily than a gentleman that she worked on earlier. Whatever the reason, it wasn’t as bad as I thought it would be. The one I had in early 2006 was pretty painful. The first one I had in October 2005 was wonderful…because I was drugged up. When I was first hospitalized for being ill and it wasn’t known I had MM, they had me very drugged plus I discovered that the more I talked to the doctor performing the biopsy, the more “drug” (whatever it was) she gave me. I recall hearing her say to the nurse, “yes, give her 25mg more…” 🙂 I learn fast. The doctor and nurse started that polite chit-chat when they first wheeled me into the room and table for doing the bone marrow biopsy. They started asking me questions about my kids and all that kind of talk. So, while I answered their questions, I started asking them all those nice chit-chatting questions and I suppose they thought it would be easier to do the biopsy with me having just a bit more of the happy medicine! 😉
Back to my doctor appointment today. I saw Jan. Unfortunately my IGG continues to rise. At least it is somewhat slow so far — rising from 1260 11/14 to 1480 on 12/12. It had increased only 100 markers from September to November, but 200 from November to December. I just hope it doesn’t start spike up by 500-1000+.
What does this mean? It means they’re going to have to get me started on some other treatment soon. Jan spoke with Dr. McGuirk and they’re going to have me start seeing one of their other doctors, a female doctor, Dr. Deauna. She’s more the “Myeloma” doctor where McGuirk et al are the “transplant” doctors. This is normal. I initially had another oncologist when I was first diagnosed and on treatment, but it became very apparent his staff was lacking in MM knowledge and/or desire to learn more where the BMT office nurses were better at their jobs. I’ll just term it that way…better at their jobs. My initial oncologist was super nice and compassionate, but in some ways he didn’t seem to know that much about MM and had to contact the BMT doctors often in order to know what treatment next. It appears this new doctor I’ll be seeing is dedicated to MM, or at least to “fluid cancers” (blood cancers). The other office I used to go to cared for all cancers (e.g. breast, prostrate, lung, etc.) I think blood cancers are just so different and it is best to go to doctors who specialize in certain areas. If possible anyway.
So, I’ll see Dr. D. within the next week, the receptionist said she’d call me later about making an appointment. It appears Dr. D. is only in the office 3 days of the week–don’t know where she’s at the other 2 days. (Golf course? nawwww…not in this snow anyway)
I went to my first Physical Therapy (PT) consultation/appointment last week and was very unimpressed. The office was cluttered, not professional, and it just felt dirty to me. After speaking to Jan today, with the new year, new insurance, and new doctor, I’m going to start over with PT. So, I’m going to cancel my future appointments and discuss with Dr. D. how to approach my leg weakness.
I would prefer to find a place closer to home for the PT and especially a more professional and cleaner place. I want to get something out of it. I was not impressed with the other place. I told Jan about it and she was very glad I did. I told her everything I witnessed. She is meeting with someone from that office next week and they’re discussing some changes, new place, etc., so my input was very helpful. I’m glad – value was added.
The other thing Jan said today is that Dr. D. works along side a doctor who specializes with neuropathy. That will be very helpful, as I’m having lots of bad effects of neuropathy from the Thalidomide and Revlimid. What I don’t understand is how did it get so bad without me realizing it was THIS BAD?
The only thing I can figure is that from the moment I was diagnosed with MM, well, not that moment I guess, but the moment I realized what kind of cancer I was dealing with (the beast), I accepted that I would have a new normal and life would never be the same. I knew I would feel different and be different. That difference included weakness and pain and other weird sensations. I guess I should have made a bigger deal about my side effects. I described the sensations at my visits, but I don’t think the other Nurse Practitioner I saw listened or realized how much weakness and discomfort I was experiencing. I often felt like her mind was a mile away. She looked me in the eye and all that~~but I feel like she was patronizing at times. She shows compassion to her patients – but I think she just pocketed my symptoms to steroids and never really listened or realized what was going on.
This is when it would be nice to have a family member with you all of the time- through all the visits, etc. Someone in your corner. I often hate that I’m the only ears with the doctors. My one sis would go with me every time if I asked her or said I needed that, but she has her own family to care for. She babysits twins 3 times a week. I can’t depend on others. That’s life. And gosh, there’s people who didn’t have any kids – or all their kids live in other states, a spouse has died – and they are in the same boat I’m in.
OH, I have some friends from my church, “sisters in Christ” is what we call each other and they all tell me to cal them for whatever whenever—and I beleive them. But again, I can’t do that to others. They have their own burdens.
So-I have my little pity part here and get over it. It could be soooo much worse- even if I had had a successful marriage and had a life long partner. My older sister just found out an old friend of hers just died suddenly a few days ago. This lady, Cathy, had had 4 boys. The 2nd boy died of Cystic Fibrosis (sp?) when he was young. Cathy and her husband had owned to local hardware stores and did very well. My sis said those kids had every toy on the market. With the boy’s doctor’s bills, they lost everything. They moved to California and back here to Missouri and somehow restarted. Then her husband got sick with I think MS..not sure..only that he was in a wheelchair and she took complete care of him.
One of the sons had called my sister to tell her that his mom died. The boys have to put their dad in a nursing home now. So, having a husband and kids that love you doesn’t ensure you’ll always have someone right there or have to go to a home. There’s just no guarantees – but one: the Good Lord will be with you all of the way, giving you the grace to get through it all. Sometimes it’s tough and we want more cushion, but sometimes I guess he thinks we need refining. Lord will I be fine and refined! :)))
OK…now this didn’t turn out the way it was supposed to. The entries filed under “Doctor Appointments” aren’t supposed to consist of entries with feelings, thoughts, opinions and the likes. Easily resolved. I’ll just file this in “Regular News” and make another entry with simple facts of today’s appointment.