Comments for Riding The Wave - Multiple Myeloma

Comment on Labyrinth VIII, The Long Good-bye by Lori Puente

Lori Puente — Wed, 22 Feb 2012 19:19:00 +0000

Thank you Kevin. I’m sorry about your Dad, but glad you feel a bit more empowered to clear the clutter and focus on his care. The grief we feel when losing a parent doesn’t seem to matter if it happens when they are young or in their 90s. They are our parents and it’s just damn hard. I will say that while I never thought “I wish you would just die and this would be over.” I have felt at times when I see my friends going through it with their parents, “I’m glad I’m already through this. It’s rough.” Then I feel guilty because I would have surely been willing to go through it now if I could have them in my life longer. I still miss them both very much.

Comment on D(ex)-Day by Lori Puente

Lori Puente — Wed, 22 Feb 2012 18:57:15 +0000

Haha, I LOVE that Hugh! Ask the caregiver!

Thank you Sam for your input. And of course, I completely subscribe to your view of facing the trials as they come. Worrying about all that might happen seems to only make what does happen exponentially profound. There is a fine line between being educated and informed and what that does to your anxiety factor.

Comment on D(ex)-Day by Hugh Stott

Hugh Stott — Wed, 22 Feb 2012 18:28:35 +0000

Wow, all good accurate stories of D-day. I was on 10 Dex pills a day for the first four days of the month for years. This only, no other chemo. Taking it at night as discussed here and had the hiccups as regular as rain. There is a pill for the hiccups that really works! I developed diabetes and now that I am off Dex that has normalized, no more diabetes.
Tough to put up with, for the people around you. My doctor says, “if you want to know how the Dex is going, ask the caregiver!”

Hugh

Comment on D(ex)-Day by Sam Culvern

Sam Culvern — Wed, 22 Feb 2012 13:24:33 +0000

This is a timely post about D-Day, and everything you say is pretty much universal. I took my 1st dose of DEX on a Friday, and screwed up the whole weekend, so I have switched to taking it on Mondays now, leaving the Revlimid on schedule ; I can count on 2 days of being ‘wired’ with the hiccups on the 2d day; by 48 hrs out things are normalizing as the dex is washed out. I will get wired up and have the insomnia,etc. whether taking it in the AM or at bedtime (but that is just my experience) and will usually be up reading at 3 AM for couple of nights! I will start my 2d cycle of Revlimid in 2 more days, and the one irritating thing I have to notice with that (of many possibilities) is the shortness of breath with exertion and chest tightness for which my cardiologist insisted on a heart cath (totally normal, BTW). This leads me back to the anemia and the MM as the causes and not angina; so I have only 12 more D-Days to go during the induction chemo, and really hope that, if I don’t have an early SCT the doc will drop the Dex and keep up the Revlimid alone. There is more than one recipe, and mine comes out of Mayo, so I’ll stick with it knowing the alternative. The blood sugar is checked at the end of the cycle, but if you are diabetic prone or have a family history of diabetes, then getting an Accu-Check device at the pharmacy can help you to monitor the glucose level at home. Concern of a pulmonary embolus on Revlimid, is real (but rare) and many PE’s don’t have leg pain or swelling in the legs to warn you. It is easy to miss if one doesn’t have a high index of suspicion. I saw MANY Pe’s as an ED doc, and many had atypical chest pain; I have a tendency to diagnose myself and I’m usually wrong since it is hard to be objective for myself. Just keep your doc informed of all symptoms, he ain’t a mind reader. Your caregiver is not a mind reader either. Being newly diagnosed, going through the workup, starting the induction chemo all have changed me in a lot of ways, and I have come to grips with what I may have to face down the road. MM is not my identity, and I don’t spiritualize everything in my life; but I am willing to face each trial as it comes, and the trials will come. My significance is not in my trial; may you always give to others and let others give to you. Peace.

Comment on Labyrinth VIII, The Long Good-bye by Kevin J

Kevin J — Wed, 22 Feb 2012 01:36:22 +0000

Hi Lori,
I must also thank you for the wonderful job you did on this series of articles – as you had tears writing it, I couldn’t help shedding a few reading it, particularly since as I mentioned in a previous reply, I’m beginning a similar situation with my father. This has been very timely and will help a lot.

Comment on D(ex)-Day by Lori Puente

Lori Puente — Tue, 21 Feb 2012 18:38:23 +0000

So I know that many of you have some very funny stories about Dex. Mine is that when the movers arrived and boxes and boxes were stacked in every nook and cranny, Dave, who didn’t get to come back to Maryland and pack his stuff, was demanding to know where certain things of his were. And if I didn’t know which of the 500 boxes it was in then it was LOST! He would rant and rave about it being LOST! It was so bad that his mother and father stopped what they were doing to open every box until they could find it. Of course this made for a mess instead of some systematic organizing of finding homes for things when you ready. Once the LOST thing was located he would start in on something else. There was absolutely no reasoning with him. And I’m still mad at him for it! haha

Comment on Labyrinth VIII, The Long Good-bye by Lori Puente

Lori Puente — Tue, 21 Feb 2012 18:02:46 +0000

You are welcome Dianne. The nice thing about a blog and the internet is that we can read them when we are ready. It is now here for all of us when the time is right. And yes, it was hard for me to do this and not without a few tears rolling down my cheeks as I typed and edited these. I was happy to try to bring something personal to each of them to help others to relate a little better. If we have to go through it, its nice to have some idea what to expect so we aren’t blind sided, as you mentioned.

Comment on Labyrinth VIII, The Long Good-bye by Dianne Terry

Dianne Terry — Tue, 21 Feb 2012 17:41:53 +0000

Thank you Lori for providing your thoughts on Gail Sheehy’s Eight Labyrinths in the book Passages in Caregiving. This is exactly the kind of information I need, and everything you said in right on. I need to stay one step ahead of what is coming next, so I can be as prepared as possible. I know we can’t always be prepared. I was so totally blind sided, in shock and devasted at diagnoses. MM has my attention now & I won’t willingly be such a lamb to the slaughter. I admit I couldn’t delve into these recent blogs, until I could review them with a clear mind and absorb into my soul the reality of this for my life now & in the future. So I think I know what you went through in writing them. Many thanks for the sacrifices you make to be there for us.

Comment on Contact Form by Serina Rynearson

Serina Rynearson — Sun, 19 Feb 2012 20:34:19 +0000

Thanks for your justification. I love to see clearly Marcy

Comment on Labyrinth VIII, The Long Good-bye by Lori Puente

Lori Puente — Sat, 18 Feb 2012 07:41:00 +0000

Thank you Karen! I forgot you were a hospice nurse, though you have mentioned it before. (Old brain cells!) In my area we had medical home hospice which is the 6 mos requirement that you mentioned. But we were also blessed to have another hospice organization, non-profit, staffed with well trained volunteers that did not have the 6 mos requirement. I was blessed to have them both working with me and my mother. Their overlap was accepted and common between the two of them, while one focused on the medical, the other focused on the respite volunteers for the caregiver. I realized later when I would learn of others’ experiences, that I was truly blessed. I also learned that it was partly due to my willingness to ask questions. Asking and learning as much information as was reasonable, helped to keep me ahead of the curve. I wanted my mother to see me as confident and calm so she wouldn’t worry. Thanks again for your expert input and sharing your personal struggle with this subject, even though you know it very well.

Comment on Labyrinth VIII, The Long Good-bye by karen sutherland

karen sutherland — Sat, 18 Feb 2012 05:35:43 +0000

lori, the sheer scope of what you have delved into to share is astonishing. what a beautiful job you have done tying in your personal experiences with what ms. sheehy writes about. as a hospice nurse i often felt such despair that so many people still believe that hospice is only for people on their deathbed – and that most people do not realize that the enitre scope of their services of nurses (on/call 24/7), medical directors for each hospice “team”, social workers, spiritual care, medications directly related to each patient’s primary (hospice) disease process and all comfort measure meds, volunteers, a certified aide to render personal care, and durable medical equipment such as a hospital bed, oxygen, wheel chair, et. al, plus much more is all COVERED BY MEDICARE, and now by many private insurance plans. and if the patient does not have medicare or insurance there are tons’s of other resources hospice will go to the ends of the earth to tap into. also, the idea that hospice is only for cancer patients is a persistent misconception. hospice is for any life limiting disease, for any age, and requires a physician to certify that the patient has six months or less to live. a re-certification is required at 6 month intervals, and since no one can with complete accuracy predict exactly when death will occur, this fluidity with the best a physician can determine is reasonable. people often come off hospice for many reasons – some to resume treatment, some because their pain is under control and they gain a new mobility and quality of life, and for many other reasons. on the other hand, some disease processes are fraught with unforseen gains/losses, ups/downs, and patients remain on service much longer than ever anticipated; in these cases recertification by the doc will demonstrate that the patient continues to decline, continues to require hospice care. what you have pointed out about personal decision making, the need for a living will, and families who are going through the most horrendous ordeal of their lives and need guidance and support during what is a real crisis is so, so important. people often envision a death will bring family members closer together, when in reality, whatever dysfunction exists will be magnified in a crisis. writing about the experience with your sister was such a valuable example of that. thank you for all the time, effort, and emotional expenditure of energy you have poured into this project. on the whole, our culture doesn’t do so well with death and dying issues; it may be surprising, but even i struggled with reading and thinking of many of the issues you wrote about – it’s different now that we two, hugh and i, are both cancer patients, both of us so honed in on LIFE. now i can understand a bit better why it’s sometimes a challenge to consider that we won’t live forever, and we need to think ahead, to reflect and plan and talk to the ones we love about our end of life wishes. one might consider how much planning is involved in preparing for a birth; surely, one’s death is as important as such a sentinel event at the beginning of life. just a thought… warm hugs and thanks, karen

Comment on Labyrinth VIII, The Long Good-bye by Lori Puente

Lori Puente — Fri, 17 Feb 2012 19:42:00 +0000

Thank you Nancy. It is difficult, but so necessary. I can’t always know the road ahead, but I like to know as much as I can expect so when I see it, I recognize it and don’t feel ambushed! I tweaked a bit one of the paragraphs on the “conversation” that often doesn’t occur to include reasons and tips on keeping the other family members in the loop. The ones who aren’t dealing with the daily grind of it. I’ve seen some families breeze through it together, all assisting and on the same page, but most often I see a bunch of people bent out of shape and really, they just need to feel included. Even if they can’t be due to distance or circumstance. Moving all their emotional support to the primary caregiver is invaluable, but often overlooked.

Comment on Labyrinth VIII, The Long Good-bye by Nancy D

Nancy D — Fri, 17 Feb 2012 19:22:47 +0000

Thank you for discussing a difficult topic. I have saved your article to share with my family in the future.

Comment on Labyrinth VII,The In-Between Stage by Lori Puente

Lori Puente — Fri, 17 Feb 2012 15:01:15 +0000

Thank you Kevin. I have one more to do. I’m sorry about your Dad. Once you get to that place in your head, it starts to move smoothly. And if you don’t have others who aren’t there yet, getting in the way! I’m hoping your disease gets quieted so you and your wife can have some good time together!

Comment on The “Head Game!” by Lori Puente

Lori Puente — Fri, 17 Feb 2012 14:53:53 +0000

There is nothing like putting your big toe in the internet waters and discovering that your words, expressions, thoughts and ideas resonate with others. It has been a very humbling experience for me with this blog as a MM caregiver, which truly started out as an effort for me to heal and maybe help a few people. I would have missed the column if it had not been put up on the listserv and a bunch of folks chiming in. It’s good for us to have points of discussion and that was a great one Kevin.

Comment on Labyrinth VII,The In-Between Stage by Kevin J

Kevin J — Fri, 17 Feb 2012 14:06:56 +0000

Lori, this has been a great series of articles – so much so that I just ordered the book for my wife and I. The story of you and your mother hits home hard as I’m afraid we are nearing a similar time with my father who seems to be shutting down and we need to deal with his care. Between that and what lies ahead for my wife as my disease progresses, I think this book could be invaluable. Thanks.

Comment on The “Head Game!” by Kevin J

Kevin J — Fri, 17 Feb 2012 13:51:27 +0000

Wow. I was catching up on some of the sites I have bookmarked and try to visit regularly when I came across your reference to my column. I was taken aback, and oddly humbled that it’s being mentioned beyond the Beacon community. I very much appreciate that you thought enough of it to recommend it to others.

Comment on Early Treatment for MGUS & Smoldering by Terry

Terry — Fri, 17 Feb 2012 02:20:49 +0000

Hi Robert, I am in Dr. Landgren’s NIH study of myeloma. I am a U.S. citizen. However, you are eligible as a non citizen for trials as long as you meet the medical requirements for the trial/study. Theoretically, priority can be given to U.S. citizens /residents. Check the National Cancer Institute’s website for details.

Comment on Early Treatment for MGUS & Smoldering by Robert Oppenheimer

Robert Oppenheimer — Fri, 17 Feb 2012 01:37:34 +0000

Does anyone know if they would accept a patient from Canada at NIH
Than x
Robert

Comment on Labyrinth V, The Meltdown by Lori Puente

Lori Puente — Fri, 10 Feb 2012 19:05:16 +0000

One of the points in posting this series is so that it provokes thoughtfulness on your part and allow you to anticipate what you might be facing in a way that you can be proactive and not have these meltdowns. Making decisions and changes in a caregiver meltdown is really hard. Its much easier to put things in place before you are in crisis. It’s not just good for you, but your loved one. They struggle to see you struggle, so hopefully this will help you to avoid this as much as possible.

I brought Hospice in for my mother long before I needed too. I wanted her to have a relationship with her caretakers and nurses, to not wait until the end when they wouldn’t be in a position to appreciate all her wonderfulness. It also gave me confidence, and her as well, that we had the right people in place to care for her. They always took time to consult with me and inquire how I was doing and educate me on what I might notice or expect to be coming next. Each time they kept me ahead enough of the learning curve to be prepared.