Well I am home after a very stressful day of appointments. First I had an uterus ultrasound to check the lining measurements, and learned I have a rare birth defect. I have a two lobe uterus! They are amazed i was ever able to have kids. So that is how my day started.
I quickly went from that apt to bible study, left early from that and went to the rheumy apt. Things went from strange to oh dear rather quickly. I had not seen Dr S before so she went over my medical history and asked all the right questions. She then told me she felt that even with out the lip biopsy she would have DX me with SJS. She is doing a bunch of blood work (only took 3 pokes, one in the arm and one in each hand, took both hands to fill the 8 tubes, OUCHY) But she told me she at this moment was more concerned with my enlarged lymph nodes and believes I most likely have a low grade lymphoma.
Dr. S is referring me to a Hematologist st the U of MN hospitals. She said I am to get in ASAP and even sent Dr. D a personal email asking to get me in now. Dr. S did not start me on any meds today like she said she normally would have as she wants to see what Dr. D says first. She did tell me they will need to do a biopsy of the neck nodes for sure if not several other places as well.
I will be seeing Dr. S again in a month and the we will know where to go at that point with the SJS treatments. Dr. S did put me in a study for SJS and neuropathy. So any meds and treatments will be covered in that thankfully. (How does every one cover the costs involved in all this?? Our bank is already broken!) They will be calling me next week some time.
Tonight my neck is sore where she was feeling the nodes, my jaw hurts from checking out the salivary glands, I am beat and I feel stunned. All this is thanks to going for a hearing test. But really it is amazing how God works all these things for our good.
Kimi
Hi Kimi!
Wow...you have a lot to digest for one day! It does sound like you have found a decent rheumy though....one who cares enough to answer your questions, explain things, think outside of the box and treat your symptoms and refer you on to check on the enlarged lymph nodes. Hopefully you can get in and get that checked out asap....and hopefully its not any type of lymphoma!
I will keep you in my thoughts...please let us know how it goes!
Hugs to you....
Good luck with it all Kimi. and yes your are so right- God does have His own way of getting things brought to our attention.
Keep us posted.
Leslie
Sorry that your day was so stressful Kimi. That sure is a lot to absorb in one day... no wonder you feel stunned. It does sound like you found a doctor that cares which is important... please do let us know how things go with Dr. D.
Take Care
Scott
Thank you every one. Yes, i do think I have a good Dr. She was recommended to me by Irish here on list and a couple of Doctors. I was happy with her and felt confident with her as a Dr as well. I keep thinking of all the wasted years of going to Doctors who never even thought to check out SJS and also ones who were just watching the nodes grow. (yes i had ultra sounds done every 6 months and one needle biopsy 2 years ago, but they did nothing more)
So I really do feel blessed knowing that things are heading in the right direction but I am scared as well of the direction they are leaning towards. So I may be whining off and on here till we know something for sure! LOL.
My sweet hubby who when with me took me out to eat on the way home ( a rare treat for us). Was good to sit and talk, I was done crying by then. ;)
Lovingly, Kimi
Kimi, I am so glad that you got in to see her and are satisfied with her. She is a little bundle of energy I think and seems to be a concerned and caring doc. She will see that you get the tests and treatment that you need. You will find the U of MN is not fancy like a lot of other clinics as it is old and I am sure hard to heat and keep up. There are a lot of great doctors there though. They don't make the big salaries there but most of them love to teach and are a real blessing to the medical training of all those students. Good luck and keep us posted on how you are getting along. Will keep you in my thoughts and prayers. Irish ;D
Kimi,
I just about fell out of my chair reading this post!
HOLY COW!! It is good you were led to this doctor...finally! Thank Heaven for that hearing test!
I will be praying every minute over this!
It was good to read you are planning to do a little whining, but you and I both know that doesn't come easy for you. Please remember to do it when things get to feeling scary. It is important to keep your stress level as low as possible in terms of Sjogren's which is triggered by emotional upset. A couple more good cries wouldn't hurt either.
My goodness! I am reeling. If you need me, I will drive down, just say the word!
Down on my knees, asking for your protection and healing!
Janna
Hey Kimi,
First off, big hugs!!!! {{{{Kimi}}}} I bet you had an interesting night. (snuggles) I'm hoping your Rheumy is totally wrong, but if not ...
I've been down this road (Lymphoma surviver) and I have some thoughts.
First of all, remember to breathe. I know, sounds stupid, but it's not. Trust me. Your brain is probably in overdrive to the point when you'll be lucky to handle making a pot of coffee. Try and slow it down by giving it something distracting. I read the "Master & Commander" series, all 21 of them. It kept my brain from worrying itself to death. :D
My amazing GP, when I called and told her the news, called back and offered me some sleeping pills. It hand never even occurred to me to even think about such things, but they helped me get through it all.
Be aware that if your tests come back positive, there will be more tests. Because lymphoma is a circular system cancer, they need to check to see it's not hiding any place else. These are no fun, but you'll get through them.
The good news is that generally (and take everything with a grain of salt) lymphoma's that show up with Sjoggies are either very slow growing or SUPER slow growing. And the GREAT news is that they are very, very treatable and the survival rates are excellent.
When and if it comes time to talk about treatment, I'd suggest you talk to your doctor about Rituxan. It's a big gun, but that's what you want with lymphoma, and it's both very effective and has the least side-effects of any of the chemos. (No nausea, no hair lost, quick recovery time (for a chemo) etc) AND it will help your Sjs.
You are in my thoughts. I hope you get in to the Hemo soon and get some answers, because really, the waiting is the worst. Feel free to ask any questions you might have.
Heather
Hi Kimi :)
I don't know what to add. I'm glad you have a good doc and that things seem to be moving quickly and Heather's post points hopefully to a good outcome.
Also hoping you get put on something for SjS as soon as possible too.
Take care - Scottie :)
Kimi,
I'm so sorry for all you've been through. I still remember how shocked I felt in December when the doctor told me I had kidney cancer. It is the last thing you expect to hear. It sounds like you are getting good medical attention and I will certainly pray for you. I know that the prayers and support of friends and your online friends mean so much. I have a good prognosis and I'm hoping that you will too. I cried every day before my surgery and felt it to be therapeutic. Keep us updated and feel free to vent your fears and concerns.
Anna
Hi Kimi
You're amazing! What a lot to take in on one day, so much to process, and yet you're able to come here and tell your Sjoggie friends all about it. It's not whining - it wouldn't matter if it was! - it's part of being a family. Thank you so much for telling us how you are doing.
I agree with the others that a daily cry is going to be the best of healing, and remembering to breathe too as Heather says. You need and deserve treats and comforts. Lovely to hear you had a meal out with your husband. How's he coping with your news? And the rest of the family?
Your rheumy sounds like a good soul, quick to respond and thoughtful. Putting you on the study for SjS and neuropathy will save you a fortune, and also means that others will benefit from your difficult times. That should help too, just knowing that you're able to do something for others. Good for Irish! Let us know how you get on at the U of MN hospital. I always prefer hospitals that are a little old and tired with dedicated staff, rather than all sparkly and new but with no heart.
Take Janna up on her offer of a hug. We all need more than we get and I know she's been yearning for a Sjoggie hug for ages. Bet she's a lovely hugger too.
Thinking of you - Chickpea
ps some people call your shaped uterus a 'heart shape'. Nicer than 'two lobe' and a lovely sounding place to cherish your little ones.
Kimi, so sorry to hear about your crummy day and the potential lymphoma diagnosis. Take care of yourself and know that your sjogrie friends are here to support you. I'll keep you in my prayers.
Hi
Can't add anything to the comments of other people re your day...
But I'm a MALT lymphoma survivor. It was on my soft pallet and disappeared between biopsy and seeing the specialist!! I have lumps coming and going but see the oncologist every 4 months so she can check them out. It seems that my body just deals with them as I had something strange in my parotid a few years ago before having the SJS diagnosed.. Now it all begins to make some sense.
Lets pray that you are as fortunate as I have been.
Thinking of you
Sara
xx
Kimi,
I'm another lymphoma survivor (9 years.) I hope that you haven't joined our ranks. Lots of people here have biopsies of swollen glands and find no cancer. If it turns out that you do have it, feel free to contact me if I can help! I'll pray for good biopsy results. Please let us know what you find out.
Cheryl
Boy all I can say is you guys are so amazing! I feel so cared for and loved. Your advice and concern is conforting! Thank you! I have been sitting here too thinking, now when can I get up north and take Janna up on that hug??
I am feeling much more relaxed on things now after what some of you have told me about your own experiences and being able to do some reading up on it as well.
I have my appointment on the 12th of this month at 8 AM and will let you all know what I learn then.
I am so glad to have found you guys so early on in my SLS walk, you truly are a blessing from the Lord!!! Thanks!!
Lovingly, Kimi
Kimi
I missed your news earlier, as I m a little behind with reading the threads. I just want to let you know that you and in my thoughts and prayers. Good luck for the 12th.
Kathyx
Kimi
wow! so much in one day, your head must be spinning, alot to absorb.
Theyve tested you, on top of it, emailing other docotrs personally, so from that aspect theyre on the ball, and it is at least something good.
I know right now it must be scary and hard to take on, but as youve read, it is slow growing and treatable, and it seesm your docotrs are good ones and will leave no stone unturned.
keeping you in my thoughts and sending you light, its no whinning or whinging, its just fact honey, and though its not nice news, its at least ben detected and going to get sorted, your in my thoughts
T x
Kimi,
Can't really add much more except my good thoughts are being sent your way. Please take care of yourself.
Terri
Thought I would lat ya all know I have not fallen off the face of the earth!! I am still here, reading but with very little time to write. But here is a update on what has been going on.
The lymphoma concerns: well I saw the hematologist and she said I may indeed have a low grade lymphoma and we could do biopsies but even if they took out lymph nodes all over my neck they may or may not learn something! I would just have a bunch of holes in my neck. Plus at this point they would only wait and watch anyways as I have no symptoms. She also said I have extremely reactive lymph nodes as well. So I left the office with a list of things I need to watch out for and orders for neck ultra sounds every 3 months for the next couple of years. If any symptoms do occur I need to get in ASAP and we'll start some type of treatment. I am fine with doing this.
As far as the SJS: All my blood work came back good, Yeah!!! But I still have SJS, LOL, lip biopsy and symptoms. Since my blood work was good the Rheumy is starting me on Lyrica. I start that in the morning. I have had to ween nearly off of my nurontin in order to start this. I have good hopes that this will help with the pain and nurothropy. Would be so nice if my toes did not burn so bad in this hot weather. I also will be part of a study on nurothopy and SJS. I need to call them tomorrow to get an appointment. Rheumy also wanted me on Exevac??? (sp?) But I am having to wait on that as we just can not afford the $24 copay. The $24 for the Lyrica was a hard enough hit to the budget. I know these meds help but a person can only afford so much!!! A total of $48 in new meds copay is about 1/5 of our monthly food budget!!! We just don't have it. I have thought of writing to the companies to see if they can help but they rarely ever will if you have medical insurance coverage of any kind.
The Rheumy is considering giving me Rituxan a she feels it will help with the pain and stiffness I have as well as with the lymph nodes. We will talk more on it in July when I see her next. Not sure how I feel on this as it seems to be a kinda scary drug. She is first going to talk with the hematologist on it.
Life has been busy here with trying to get the garden in and getting ready to go and see my daughter and family and then on to a dear friend's for a few days. I am looking forward to all this but the 8 hour car ride is going to take a toll on me, shorter rides always do. So we are planning on LOTS of pit stops and walking to help ease things.
Think this is about it, Oh, my pug dog is doing quite well now that they are leaving her on predisone. She developed a auto immune disorder last memorial weekend and will drop so low in her platelets that she starts to hemorrhage! So fun to have two auto immune things on one family! LOL
Lovingly, Kimi
Welcome back, Kimi, glad to hear you seem to have things under control. Your rheumy sounds like a keeper, good plan, proactive, and yet cautious enough to involve other specialists, and your hematologist is a keeper, too!
Sorry to hear about your little dog, but at least the two of you can share an extra bond!
Enjoy your trip, remembering always to take it easy, protect yourself from sun and excessive heat, and keep up with your medication schedule...I always find it very easy to miss doses when I'm travelling. Let your daughter know she's expecting "visiting royalty", and allow her to pamper you, and focus on the visit, not side trips and local attractions.
Hi Kimi
Thanks so much for letting us know how you are. It sounds as though your doctors are being very sensible and treating YOU, rather than following a protocol. That's so good to hear.
I hope you have a restful visit. I love Linda's idea of 'visiting royalty'! Here in the UK - where we still have that antiquated system of royalty and nobility - royal visits have to be prepared for carefully. Apparently a new bathroom/toilet has to be built because the Queen can't use one that anyone else has previously! Maybe you don't need your daughter to prepare quite that carefully but you certainly deserve to be cosseted!
Take care - Chickpea
I agree with Chickpea and Linda!
Sending you sincere wishes for comfort and wellness, Kimi honey!
Janna
PS I went to the yarn shop in Grand Rapids today with my mom. She bought a darling pattern to knit a pair of striped socks.