Today we met with Dr. N, my Medical Oncologist, who had the results of all the tests I was given last week (with the exception of the bone marrow biopsy results, which are still outstanding) My new diagnosis is a bit more daunting than the original.
High grade b-cell lymphoma with MYC and Bcl-2 arrangements.
Doctor M called it a “Double hit lymphoma” and said that it is a “Particularly aggressive b-cell lymphoma.”
I’m still working my way through this, mentally, and have asked my doc to send me any written information that I can study. He is a lovely man, and will take as MUCH time as I need and want to discuss it with me, but I don’t feel I can 100% connect with the information until I can read a bit about it. We all learn differently.
The chemo is going to be more aggressive than originally envisioned, and this is the part where I think I may need to take my care into my own hands in a way.
So far St. John’s has been good, if a little uneven, with the quality of care. But one thing that’s been a constant is the confusion on the 2nd floor, the main Cancer Center where I’d be receiving chemo treatment.
The staff seem to be loud and a bit aggressive with each other, but I may be misreading the room. I don’t like loud noises, or loud voices, when I’m trying to work through something. I don’t know how difficult it will be for me to insert myself into this environment each day for chemo.
Also, there seem to be odd misunderstandings. For instance, as I checked in today one of the reception staff asked if I had a port. I said, “Yes.” Somehow that got translated to the nurse taking my blood thinking that I had requested that my blood be draw from my port, which I definitely did NOT request.
The port hasn’t been used yet, I have NO IDEA if it’s entirely healed, I wouldn’t have requested that.
But there it was, THE PATIENT HAS REQUESTED THE PORT BE USED. So the nurse tried to use the port, it didn’t work, she couldn’t get the needle thing in and it hurt like hell. The nurse seemed put out with me, upset that I had my family with me, and the second nurse who came in to draw the blood from my arm was a bit abrupt, too.
Whether this is just ‘their way’, whether I was ENTIRELY misreading the situation (very possible) or whether there was some underlying reason for the oddness are scenarios I’m going through in my mind. Suffice to say, the vibe of the place seemed odd to me.
But, then again, I just heard that my cancer is more serious than I thought. I’ve learned that it has to be treated more aggressively, and EVERYTHING seems odd to me.
I would be VERY happy to be proven wrong. It may be that I’m just terribly oversensitive right now because of the change in the diagnosis, but it feels as though the needs of the patient may not come first in the Cancer Care Center at St. John’s.
Appointment Madness
I don’t know where the disconnect is, but I’m hoping that when I go back on Thursday for my “Chemo Class” I’ll get a better feeling about the place.
After my meeting with my doc, when ALL I wanted to do was crawl home, write a bit, do some research and contemplate what I’d just been told, I had to spend an hour standing up, leaning on a high counter, while one of the receptionists scheduled appointments.
Making a woman with so much cancer pain stand at a reception desk for an hour scheduling simple appointments just seems cruel. At the least it seems they should have a dedicated scheduler on staff where a client can SIT DOWN with office staff and work through setting up appointments.
More to the point, I believe these appointments could have been scheduled very easily without me even being there! I mean, I have nothing else on my agenda right now except for getting better. If they’d just schedule the infusions, appointments and possible transfusions, I’ll just show up (or let them know if I can’t make them, and change them) It seems a perfect use for the MyChart portal.
A Different Center?
I definitely want to continue my treatment with HealthEast, but an alternative would be to move my chemo to a different Cancer Center within the network. Woodwinds is the center where I had the Bone Marrow Biopsy, and would be an alternative to St. Johns. But would it be any better? What makes me think one center would be more caring than another center? It’s farther away, and it could/would make things more complicated with my Med Oncologist, which is not something I relish.
I don’t really want to change, I just want to feel better about St. Johns. And that might not be possible, and I will just have to live with that.
HealthEast and HealthPartners are always sending out surveys for patients to fill out, I have two in my bag right now. But do they REALLY want to know about issues, are they REALLY interested in making the experience of healing cancer as good for the patient as it could be?
Am I just being difficult to ask these questions?
I think I need to sleep on a lot of stuff. In all honesty, once I get going at ANY Cancer Care Center, I think I’ll just be on auto pilot as I fight through however many Chemo sessions I end up needing. I may just be grasping at silly details to keep my mind from focusing on worst case scenarios.
Farther Along
The phrase, “Stem Cell Transplant” was used as a possible prophylactic measure against return of the disease. Having been through that with Gerry, and not really knowing what that might mean in terms of insurance, etc., I’m just leaving that alone right now.
It’s scary, though.
Well, fuck and dammit, Annie. thanks for the update. I hope you find better care or that someone can get the present place to be more caring. I hope to goddess that they are bright enough to have a patient advocate person or dept. xo.
My thoughts exactly. Most facilities have a patient advocate dept that you should take advantage of. First impressions often are spot on. Listen to your impressions andspeak up. It will help you and all the other patients who may be feeling the same way and think they just have to shut up and bite the bullet.
I’ve been reading your blog posts with interest, this is my first comment. First of all, I’m so very sorry that you are going through this; your family has been through so much already. I wish you strength and grace to get through this journey. I went through chemo for breast cancer in 1999, and the early parts of my treatment were not unlike yours, in that it felt rough and impersonal, and could have been so much kinder on the parts of the caregivers. Somehow, they don’t seem to “get” how terribly stressful everything is, as you try to come to terms with all the things that are happening. In my case, it did get better, once the treatment actually was underway. At that point, the oncology nurses did start to know how to deal with me, and how to keep me emotionally, if not physically comfortable. Sometimes physical comfort is just not possible. Chemo is hard. I’m sorry everything is so overwhelming, loud, impersonal, etc. I do hope that it will get better for you. I hope that you can find someone, a nice and bossy friend perhaps, to run some interference for you!
Annie – you need to find a cancer center where you feel comfortable in the chemo room. The nurses at mine were lovely- gentle, kind, and quiet spoken. (Neither here nor there but I made one of them a scarf with some of your yarn because I liked her so much.) The chemo training may help alleviate your concerns but if you don’t get a good feeling there find another.
*Bunny hugs* because I can only imagine a smidgeon of your pain. I’m so sorry. <3
Is insurance the reason you’re not going to Mayo? I remember Gerry’s positive experience there.
It’s partly insurance, but mostly because it’s so far, and I don’t have the luxury of having the same kind of caregiver that Gerry had (Gerry can’t drive as much as I could)
Unacceptable behavior by staff. They should be careful and kind. I don’t care if they’ve had a bad day. No excuse. Keep your chin up. I love your attitude.
I am so sorry Anne!
My past boss Mary (who owned R&M West Coast) has been going through alternative cancer treatment in Arizona. She was Stage 4 Breast Cancer 5 yrs ago, and had a double mastectomy. Then this past November was diagnosed with Cancer in her spine, liver, lymphnodes, and brain. The Dr’s gave her 3-6 months. She had heard about this alternative cancer center from a friend who was going there…..She immediately went there with all her diagnosis information. They ran some tests, and thought they could help her. By April all the cancer was gone from her spine, lymphnodes, and liver. They are now working on her brain, and the treatment is working. They have seen significant reduction in cancer cells.
Keep hope! Sending you strong thoughts, and prayers for a complete recovery.
It’s all very scary, but I hope that once you’ve sat with the news a bit, and read more about it, you will feel better able to handle what’s coming. All the best wishes to you.
You might ask to speak with a care coordinator or a person in the Doc’s practice who has an overview of both places. What you ask isn’t unreasonable
Remember those first appointments you had trouble getting scheduled? You need that lady again or someone like her. When you’re not so bowled over be a bit more assertive about your needs. I don’t think health workers always know how they come across no matter how many training sessions attended. Yes, lve been both nurse and patient. Bless you.
Making you stand is cruel and I can’t believe no one working the desk has any common sense. I am pissed on your behalf. Your complaints sound perfectly valid to me.
Prayers for healing
I’m following your blog on FB and will continue to send healing thoughts your way.
A suggestion to help in your healing, I did a lot of research after I lost my MIL to cancer and what I’m seeing suggests strongly adding holistic healing to traditional chemo, it seems to aid the body in the fight and
protect your body from the chemo. Also cancer feeds on sugars, esp refined sugars.
Do use the medical marijuana to the max, everything I read suggests it will not only deal with the pain but also the cancer
I know drs will say no, but they are in the pocket of the folks who are getting rich on cancer.
((anecdotal side story, friends Rottweiler diagnosed with bone cancer, no surgery, only holistic treatments in his 14th month past diagnoses, doing awesome))
:Food for thought, the video that started my research after I lost my MIL….
https://youtu.be/xVeyHsC4P20
I’m a biologist by college degree, fiber artist at heart. Much strength to you in your fight. I wanted to share these findings with you, hopefully to help your healing, I will only send healing thoughts and strength going forward.
Annie, speak up and ask for what you want. Sometimes a gentle reminder is all it takes, but sometimes you need to be firm with them. It’s your body, your cancer and your pain. Let them know you can not tolerate that type of slapdash treatment and that you have gone so far as to research other places.
Hopefully that’s all the wake up call they need. If not, get louder, the squeaky wheel offer gets the grease. Yes really!
Trust your instincts. Not all cancer centers are like that. Mine, for example, did schedule all of my appointments without my being there at all. They just let me know when to show up. The nurses were kind and gentle and soft-spoken (I still send them treats on my end-of-chemo anniversary every year). There was live piano and foot massages during treatments and much gentleness with the port situation. I know you don’t need One More Thing to do right now, but can you get some support from a friend to help you do some research and check out the other cancer center options in your area?
Keep your strength up however you can, Annie. Endure. Thinking of you every day and sending all the good juju. XO
Thank you. Good strategy. I do have a good friend I can let loose on this, she will not fail me.
You may have done this already, ask for a script for Topical Lidocain. 1/2 hour before port access apply cream to port access area and cover with some plastic wrap. It won’t be perfect, but eases the needle pain when they are accessing the port. Mom had 3+ years of chemo and the ritual of applying the cream before appointments belonged to my mom, my sister and I.
Yes, my oncologist did this for me today. He really is lovely.
Dear Annie,
First of all, fuck cancer!! I personally have found that these places “do this everyday”, it’s “their” routine NOT YOURS. I wish to god they would make it easier for the patient who’s attempting to come to grip with what’s in front of them. This is where the medical community can really improve. If you have someone who can advocate for you that can be extremely helpful. Do your research and when speaking with your oncologist ask, If I were your family member what would you do? This usually stops them in their tracks and reminds them to slow the fuck down.
I’m sending you so much positive energy. Breathe
Hugs,
Michele
Dearest, reading this post I have tears in my eyes. The battle gets bigger, but no one has a bigger heart than you, and I believe you will face it with all the courage you’ve faced the challenges of the last 12 years.
My suggestion on the care issue echoes much of the above, with a twist. I recommend sending a link to this blog post to the patient advocacy department at Health East. Their response will tell you what you need to do.
https://www.healtheast.org/forms/form-contact-healtheast.html
As for driving to the Mayo, I know several folks who would be thrilled to be able to help with this, so if that ever becomes a needed option, don’t shy away from it because of concerns for who drives. Those same folks are happy to step in to drive Gerry if/when he needs it.
You made me cry, Ellen.
So many good comments and suggestions here. And, of course, you have seen it all before. You are allowed to be sensitive and ask all the questions you need to. In orchestrating my husband’s cancer care I had to remind a scheduler that the patient was dealing with life or death here and that she needed to be more sensitive and efficient. I said it as nicely as I could but she got the message. It’s part of their job. I hope it all irons out for you and they definitely need to give you a chair!
Mayo. Please. Serious disease needs world-class care, including from the admin staff. Please.
I’d love to, but logistically I just have a hard time seeing this happening. I really need my husband to be an advocate for me right now, I’m exhausted, and can’t do for myself what I did for him 12 years ago. He’s overwhelmed with his OWN cancer and his ongoing heart condition (a result of a new chemo drug he took in March) We’re kind of a mess.
We took my mom to the Cancer Center connected to Methodist Hospital in St. Louis Park and don’t know if this is an option for you, but they were absolutely wonderful!
My husband is one of the co-leaders of the Multiple Myeloma Support Group that meets there each month. I’m not sure if it’s an option for in-network chemo, though.
This makes me so very sad. Know that I, among many many others, will be sending you healing thoughts as you move through this difficult time. You are a treasure to us all!
Find out who your patient care coordinator is and then work with that person to be your own patient advocate while you can. Eventually you will want someone else to be there for medical care conversations and choices as chemo brain is real and foggy.
I have been the primary caretaker/caregiver for my best friend who had both Non Hodgkin (Diffuse B Cell – same as your initial diagnosis) with Hodgkin Lymphoma markets. A relapse 13 months later showed that her primary lymphoma was always Hodgkin. And very aggressive NH and that treatment only put the Hodgkin into remission. While her Stem Cell Transplant was 9 years ago, and is cancer free. Onset of CVID (IGG) means that we have increased our visits to local oncology and scheduled rechecks with MDAnderson, I still go to those serious checkups. I would not be anywhere else in the world but by her side.
If you ever need to talk, let me know. I am in Texas.
There is no excuse, other than blatant disregard, for your experience with staff today. I’m so sorry you had to go through it. Those patien surveys? Oh hell yes fill them out, completely and thoroughly! Maybe Gerry can help you?
When I had my run in with our local regional health complex, I was not kind, gentle, or anything straight forward. Didn’t expect anything, but *did* describe fully my experiences. In detail.
Imagine my surprise when, a couple weeks later, I got a call from the head of hospital, apologizing for my treatment. Given that the procedure required later local intervention to heal properly, I mentioned that too. Might have said the word incompetence. Might have said that a vet tech could have done it better.
I got a written apology, from both head of hospital and head of the department.
Use the patient advocate, definitely, however DO fill out those surveys. There’s no excuse for the crass treatment you received.
Fuck cancer! Been there hated it. One thing that helped me was having a knowledgeable friend be my advocate. She went to my visits with me, stood up for me when I was too weak to do for myself. Surveys are read and acted on so be sure to fill out. I also copied them to my doctor. They are not always aware of what is going on outside of their bubble. Since you like your doctor, they will channel your concerns to administrators who need to know.
The Mason-Dixon blog led me over here. I’m so sorry that you’re having to go through this. I agree with others – _absolutely_ fill out the surveys, and yes, let your friend loose when you need someone to step in and make things better with your care.
You have the right to be a picky eater, to say no to blankets, and to have things the way you like them. I haven’t been in the same situation as you, but in bad spots I know that people want a way to show you that they care about you, which is often food, or handmade items. Hopefully (I haven’t read all your posts yet) you’ve found a way to balance that? Can they bring ingredients? Can you share your favorite recipes? Share your favorite yarns for stash-building?
I hope that you will kick your cancer’s ass and take the time you need to heal afterwards. It is hard on the body to get better!
Also – I’m in Houston about 20 minutes from M.D. Anderson. My church has reduced cost apartments for people coming to the Houston Medical Center for treatment. If there’s ever something I can do to help, please let me know!
You are so kind – thank you so much for your well wishes! My last teaching gig before my diagnosis was in Houston at the fiber fest, and the folks there we some of the kindest I’ve ever had the joy of teaching!
You’ve already received lots of good advice and offers of help. Trust your gut, find the place you’re comfortable with, and accept alll the help. Knitters are the BEST.
Oh and maybe talk to your doctor about all this – he sounds like he cares.
I’m sending healing vibes and wishes for much strength for you and your family.
I just saw Evelyn’s post about your diagnosis and fundraiser on Ravelry. I am so sorry! I’m a GIST survivor. Cancer sucks! Eleventy! Sending you all the mojos for helpful treatment options.
Reading through your post — I don’t think you are grasping at silly details at all. I second (or third) the suggestion to establish a relationship with the Patient Advocate if you are considering having your treatment at this hospital. I suggest getting the person’s name and contact info — that way, if you get in a situation where you need advocacy sooner than the next business day, you will have a chance at getting it. I’ve also learned that looking the staff person in the eye and saying “STOP!” or “STOP NOW!” in a clear, firm voice will usually make them stop doing what they are doing and go get a supervisor or an attending.
A couple of other thoughts. It sounds like you may very possibly know some of this already, since you have already been through family cancer treatment once, but just in case.
If the big reason you’re avoiding Mayo is because of the travel requirement, I know of at least one residential hotel in Rochester that offers free shuttle service to and from the clinic several times a day. It’s much less expensive to stay there than it is to stay at one of the big hotels across the street from the clinic campus, and the accomodations are small suites, with a bedroom, full kitchen, and washer/dryer in each one. If you like, I’d be happy to look up the name of the one I know about.
For noise, if you can tolerate them, I highly recommend taking as many individual packages of earplugs with you as you can fit into your bag/pockets/bra/socks. I like Earsoft Yellow Neons, which come in several different sizes and shapes. I also got a small MP3 player that I loaded up with music and audiobooks for my month of surgical recovery, plus a pair of noise-canceling earbuds to listen with. The earbuds almost completely blocked out the background sounds of the hospital, and I was able to create my own environment with audiobooks and music that I liked.
Excellent suggestions. The mayo hesitancy is entirely insurance and logistics related, although my husband’s hemotologist (who also had lymphoma, ironically) is a lovely woman who is trying to set me up to get a 2nd opinion at Mayo. It still may end up being there. They’re talking about a stem cell transplant farther down the line.