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Posts (7)

Thu, May 21 7:08am · Tips: Traveling to Mayo to get medical care safely during COVID-19 in COVID-19

My husband was very immune compromised for several years when we needed to visit cancer centers for tests and treatments outside our community. We opted for a small RV which can be parked at the medical facility, sometimes even overnight. They are available to rent if you don't want to take the dive into ownership and actually cost about the same as staying in a hotel and paying for restaurant food. I recommend googling class B or C RVs for rent by owner in your area. A class B is no different than driving a regular van, but has a kitchen, bathroom, and bed. A class C is roomier and really not difficult to drive, especially if it is 24' or so feet and you don't try towing a car behind it. Owners registered through rental groups must adhere to strict sanitizing procedures between rentals, but I will do my own when I head to Mayo JAX for breast radiation for 5 days in June. When renting from an owner, prices are often negotiable, and may be decreased when they are advised of a medical need. Many owners are not traveling right now due to partial or total park closures so are renting theirs for at least the time being. I'm no real expert, but may be able to answer simple questions any of you have. For me, this is just the easiest, least scary way to travel right now.

Thu, Apr 16 1:46pm · Deciding whether to have diagnostic sentinel lymph node removal in Breast Cancer

Hi. Recently diagnosed with DCIS and considering double mastectomies myself. Also concerned about having lymph nodes removed so really appreciate your question. We are in the same delayed-surgery boat and am curious as to how/where you were able to get it scheduled at all. I really hope someone responds to your question as it seems your situation may be unique?

Wed, Apr 8 11:21pm · Are you getting cancer treatments during COVID-19? in COVID-19

Hi, I was recently diagnosed with DCIS and before I could have either a mastectomy or lumpectomy, all 'elected" surgeries were cancelled, no new surgeries being scheduled,
and no wait list being maintained for some unknown future time. Despite needing surgery first, I did get to meet with a radiation oncologist today via my first teleconference which went well. I have had labs at our local cancer center to monitor a precursor condition I have for myeloma, but my hematologist postponed my appt from this week to late June. Additionally, I have been in the ER which was no small feat to get into and to my PC's office for follow up. Based on these experiences, I cannot stress enough how important it is to stay home to not only protect yourself from the coronavirus, but to keep from picking up anything at all. I feel we are mostly on our own right now unless one has a life-threatening emergency. Everything is focused on the pandemic right now as our doctors and hospitals try to be prepared for the worst. I found it heartbreaking that members of my care teams did not have masks to protect themselves except in the ER. The limited number they did have were being kept in reserve for their patients though many expressed fear for themselves and their families, especially a nurse who was expecting a child. These people have big hearts to have chosen the medical profession, but never bigger than right now as they show up each day to take care of us. We can help protect them and ourselves by staying home, getting enough rest and exercise, supplementing with vitamins, and managing our stress levels to stay as well as possible and keep our immune systems strong. I'm ok, trying to find the gifts in every day and maintaining purpose in my daily life. The death of a very beloved family member (no funeral allowed) on top of a COVID test, breast cancer diagnosis, and worry over my son's suffering grave effects of this pandemic, brought about a very tearful couple of days before I was able to shift my focus back on to the plight of others who were and are going through so much worse than I am. Life is uncertain now, but it hasn't stopped. Our days are more precious
and sweeter than ever before as a result of this uncertainty. I wish everyone here well and hope you are all able to find some joy and meaning in every day going forward. Blessings to you.

Sat, Mar 21 3:34pm · When plans change because of health issues. How do you cope? in Just Want to Talk

Gosh! I've been monitored for 8 years for my MGUS. Sorry to hear about your progression to SMM. We all know this may be in our future, but can't be easy to hear that diagnosis. Would love to hear more about your care at Mayo and whether you participate in the P -Crowd study at Dana Farber. Hopefully their research will provide a future for us that is free from MM.

Fri, Mar 20 6:17pm · When plans change because of health issues. How do you cope? in Just Want to Talk

Thank you for responding and for providing info on the breast group. The biopsy and breast MRI seem to indicate that my cancer is small and non-invasive. Not the slowest growing, but also not the fastest, so in the best of all worlds, I will be fine. Unfortunately, I require neck surgery, too, which is also postponed due to the virus and has now been given 2nd priority after we deal with the breast issue. So I'm in a little discomfort which I'm hoping PT will help if they actually continue providing it and if I deign it wise to go if they do and risk exposure since Im considered high risk. The breast oncologist I had my heart set on caring for me is not accepting new patients due to the outbreak, I learned today. So I've reached out to my cancer specialist at Mayo who monitors a precursor condition for myeloma I have to see how y'all are handling surgeries and the newly diagnosed there now, but don't expect to hear back for a few days given the current load of calls and emails. I am ordinarily a crazy busy person out in the world, but will find pleasure in being home soon. Not feeling great and doing what I can to feel better right now. Monitoring my temp and symptoms to see if I should get tested and will not delay if this looks like it could be "it". Definitely in isolation to protect others just in case.

Fri, Mar 20 5:25pm · When plans change because of health issues. How do you cope? in Just Want to Talk

The change in my plans were not travel.related, but are medical in nature. Was diagnosed with breast cancer 2 weeks ago and had planned to get surgery and subsequent treatment behind me very quickly. The good news is that I should be ok.following all that, but I am now unable to proceed with any of it for the foreseeable future. There is now a moratorium on all non-emergency surgery which I must first have to begin radiation and hormone suppressant.therapy. Trying really hard to find any blessing in the delay, but it is getting harder to stay positive given.the difficulty in even having consults with drs I will need on my care team.